Who we Are

I join many others who are intent on measuring disability by what we have lost, all that we no longer can do. The list only gets longer. Running, walking, driving, playing sports and on and on.   That opens a narrow window on the quality of a life.   Probably that standard is very male. Most guys just want to be jocks. But is that all there is?

What about all we still are, what we do and give to others? Don’t those count? My kids are grown and gone, on their own, if such exists. A famous anchorman once told me that never really happens. I am involved with my children as I always have been. That has real meaning to me and is somewhere in the recipe for a good life.   And what about our spouses and partners? Care giving is not just about bedpans and meals on wheels.

Meredith and I have been interviewed about caregivers and have made the point that everyone in a relationship is a caregiver. We are advisors if not anchors for each other. We contribute to lives.  I am not minimizing the pain that accompanies loss. I feel it every day. I am only suggesting there is more to consider as we continue to evaluate our lives.

I have written that who I am sits in my head and heart, not in my sneakers. I am not above wallowing, but coping is an endless mind game. What is missing in life hurts, but what still is there has a positive place. I am currently writing about self-absorption for my new book. Being honest with ourselves is a mighty task but one that is worth working toward.

 

 

39 Responses to Who we Are

  1. Pam I Am February 29, 2016 at 3:53 pm #

    Intriguing. I don’t think your sentiments are necessarily male in origin. As a woman, I certainly think of my disability in terms of physical abilities lost. I think I may just mourn different physicalities (i.e., less jock-centric and more dance and craftsmanship-oriented). And while it’s true that we are still able to give to others as our challenges mount, I find that even that window of myself becomes smaller each day. But it’s all I have and so I do my best to make all of my interactions have meaning, no matter how small.

    I hadn’t ever thought about the point that “everyone in a relationship is a caregiver.” I think that may be true in most cases, but sometimes, there are friends and relatives who cannot care for you because they emotionally deny that you need caregiving at all..

  2. Jan February 29, 2016 at 4:33 pm #

    “What about all we still are, what we do and give to others?” I’d say, Richard, that your sentence sums it up rather well and that your post is encouraging, positive, and true.

    And that, “…everyone in a relationship is a caregiver.” I think that is true, also. Spouse, children, husband’s dad (about to move near us to manage his full-time care at a “life care center” — bless those who work there, truly), friend, acquaintance at the grocery with her own life story, any human… “We contribute to lives,” as you said.

    I don’t personally have a disability or handicap. (Yes, I have worsening MS, have a legal and needed blue car placard, a cane that I use very often now, I can’t do sports as before, am in pain, etc., etc.)… what I personally have is a “health issue.” A big one — others call it more true to reality, but I suppose I use the terminology of “issue” because, for me, it keeps me forward-focused and outer-focused and away from myself. Works better that way for me.

    Perspective rules. Here’s mine that your title reminded me of that sustains my personal perspective: https://www.youtube.com/watch?v=CqybaIesbuA

  3. Jan February 29, 2016 at 4:59 pm #

    Two other things:

    1. Had a meeting with clients this morning–the first time I took and used my cane, and with angst. Guess what? No one said anything. I think because it didn’t matter to the subject at hand. My angst was likely self-absorption and needless worry.

    2. Just because I have faith (as that song implies), it doesn’t mean that I think that everything is rosy, that all can be explained, encouraged, or breezed over, just that I’m hopelessly human. Or really, hopefully human.

  4. Brian L. February 29, 2016 at 10:18 pm #

    Great post, Richard! It’s so easy for us to focus on the negative, that we sometimes fail to recognize the positive. What a shame that can be. At some point during my decent from racing motocross to full-time wheelchair, I realized that one benefit of a disease like this is that you can really clean up your priority list. There were lots of things that I thought were so important, that in my new reality, weren’t. The things that truly matter are the types of things that you’re referring to. When I first started following your blog a few years ago, I sensed an awful lot of gloom and doom in your posts. Lately though, you seem to be acknowledging some of the important stuff. I’m proud of you, man!

  5. Kat March 1, 2016 at 10:22 am #

    Nice post, gave me a warm and fuzzy feeling. You have a good balance. Appreciate your brutal honesty at times about this stupid disease and your reminding us that there are still positive experiences to be had. Sometimes we just need to open our eyes and hearts wider to see them. There is constant adjustment. You lose the ability to type with your right hand, so you type with your left hand. You can’t drive to the movies, so your friend picks you up and you enjoy the experience together. You can’t participate in sports, so you read so much more. Books you never thought you would ever read before. Your mind is opened and enriched. It leads to more interesting discussions with your spouse, partner or friends.

  6. Jenny March 1, 2016 at 1:15 pm #

    Please… let’s see things as they are. Insert the words “as we age”. Our lost of some function, mentally and physically, would occur whether we suffer from MS or not. I think the elderly may relate to some of our “losses”. We decline in abilities as we age, maybe not to the extent of being unable to do some things, yet it still is a decline. I, as many you, will try to do what I can, for as long as I can and will be so grateful for the things I can still accomplish.

  7. Sandy Stolaronek March 1, 2016 at 1:20 pm #

    I have the big problem identify with who I am these days. I am certainly not who I once was or who I want to be. I’m always wondering what comes next. With nothing to look forward to any longer, I wonder if there is any happiness left to be had in my life. I think the only thing that I can try and look forward to beyond this point is a cure. I feel like I’m under a cloud all the time, just waiting for Sun to shine again. I find it hard have the motivation to even desire getting in the shower and get out of house these days. I used to be a morning person with a lot of energy and the real get up and go. But I think my get up and go, has got up and gone. I know that there may be ways I can contribute to society, and I don’t know what that possibly be right now. Hopefully, I will find a way to do this. Because, as we all know the old saying; everybody’s got a purpose, I’m just trying to find mine.

  8. Jan March 1, 2016 at 2:49 pm #

    Hi Sandy I myself think that your last sentence says something in that you’re still trying to find a purpose amidst how you said you are feeling. So I am reading that there is some hope in that.

    If it is any help I sometimes push past how I am feeling and just take the action I know I need to do… this morning I was not going to get up early after improper sleep and go swimming.amidst a tight schedule. I almost gave up on it again, dreading the rather challenging walk into and out of the place and could easily have made excuses to myself but then just decided to go and set my sights on the positive part of actually being in the pool. Going set a good tone for the day.

    I myself

    • Sandy Stolaronek March 4, 2016 at 11:46 am #

      Jan; Yes, there are times when I do push past what I am capable of doing, albeit; few and far between lately, despite being on the powerful MS drug Tysabri. I’m not so sure that this therapy is doing its job like it was in the beginning, but I know that at least I don’t feel like I did before I started this drug. I get in a rut sometimes, where my fatigue is more severe and I can’t go anywhere, then the depression sets in and I feel like it’s never going to end. I know that I’ll come out of it eventually but at that time, there’s no end in sight. All I have to do is look around my house and I can see how much things have changed and how much I’ve changed, because the state of my house is a reflection of what I can no longer do, which is keeping up with the house and the housework. I can’t even cook for myself any longer. Maybe I could make a sandwich, as long as I sit down, once I get the items out that I need to make one. I think I could really use a power chair now, but I have not bothered to look into getting one, but one day I will. That’s just another reminder of who I’ve become. I guess if I had one, then every time I would use it or see it sitting there, without my sitting in it, I would think; I can’t believe that I need that thing or that it’s even sitting in my house. But I know it would make my life a lot easier and even help with my energy level, because I wouldn’t have to walk through the house so much and cause my brain to put forth so much effort, that it causes more fatigue. But one day I will and maybe by then, I will accept all of this and all that it has taken from me. Maybe I could adjust a little easier to every new normal that becomes the new me.

      • Jan March 5, 2016 at 3:18 pm #

        Sandy, I read your reply while sitting after being in the sun for a bit (not wise for me, actually). A few thoughts:

        * Yes, sometimes it certainly can feel as if it will never end, that’s for sure. And then, I get some other challenge to add.

        * What I have and do use when I don’t need kitchen leverage is a black drafting chair on wheels that I can raise and lower. (And our boys like to spin around on it at times–they are 20 and 21, btw. Never too old to be a kid).

        * Speaking of kids and (MS) drugs, in addition to the earlier song, I also like Huey Lewis and the News. Yep, quite the contrast in lyrics, for sure (eeks). There’s just something about the upbeat beat and likely cities mentioned. My heart can still rock to it all, even if my feet can’t.

        Yesterday, when I parked at my supplement shop, a guy in dreads pulled up next to me, and when I got out of the car he was laughing, commenting that I was really jamming! (Whoops, it was Huey on full blast, with me singing along. Hmm, if I could do a life do-over, I’d maybe be in that band, ha. How fun).

        So now you know that music inspires me — in various ways, so it appears.

        * Getting back on track, I will say that it isn’t always mentally easy to be in the electric scooter at Walmart or my grocery stores (more of that lately). I, too, sometimes shake my head in disbelief, esp. in thinking of a comment said in jest about needing a “surrogate dancer.” Owwwwch. Yes, in jest, but still.

        I really do have a lot to depress my spirits, but I just don’t let that happen as best as I am able and “just keep swimming, just keep swimming,” as was said in Finding Nemo. (Instead of focusing on barely making it to slump onto the bridge flagstone halfway to my car after a swim, I think of the very kindly woman who stopped to ask me if I was okay. On one hand, disbelief about it all; on the other hand, a smile in thinking about a nice stranger).

        So, sometimes for me literally a cry amidst more dust; other times “The Heart of Rock & Roll.”

      • grandma nancy March 12, 2016 at 3:16 pm #

        Sandy,
        A bit late with a comment but I seem to have some of your same issues. I have been using a Rollator with a seat in the house. It’s helpful for ‘carrying’ things in the kitchen and I can at least manage my breakfast and lunch. And when I get too tired standing a seat is right there. I’m trying to get out of my own head and use this outside for short distances in stores. MS sure can give us lots to overcome.

  9. Jan March 1, 2016 at 3:02 pm #

    I also think that who we are means that we try to understand who others are and to notice the world around us.

    Have to say that I am challenged by another Christian woman at times in the locker room… One might think that I would enjoy her Christian music she audibly plays in her iThing, but actually I kind of cringe in thinking that it seems somewhat self-absorbed.

    And that also reminds me of my prior, recent link to a song that really helped me out, but I also want to be sensitive that it may not have the same effect on others. Just saying.

  10. Sue in TX March 2, 2016 at 2:01 am #

    Yes, I think, at Richard’s initiation, you all may have brilliantly out lined the self-absorption paradox!!! MS is such a seductress, easily tempting one to ruminate about all the losses it causes. This has been my approach lately, and it
    really stinks as a coping mechanism because it’s caused me much anxiety and sadness. So I struggle each day to get out of my own head. I discovered that if my motive of directing my attention to my MS is not to ruminate, but for personal growth or self reflection, I have a more positive outlook. So I’m not surprised that you all used a form of self reflection, rather than self absorption, to cope. Whether it’s Jan’s changed perspective, Brian’s clarification of priorities, Kat’s openness to new experiences, Jenny’s gratitude for accomplishment, or Sandy S’s seeking a purpose, I see there are many positive ways I might be able to dodge my own self absorption about my mS. But I think Richard’s use of self reflection was best: MS did not take away how I connect to others in what I do and give.

  11. Jan March 2, 2016 at 9:01 am #

    I agree, Sue! Your thoughts and Richard’s are giving my day a great start 🙂

  12. Jan March 6, 2016 at 5:45 pm #

    Since Richard is likely busy with the book, I will give an example of what being positive (or communicating in a fun way, be it positive or negative) can do.

    This morning at our large church, a greeter said “Hi” and also, “How are you doing?” Well, many here (myself included) have contemplated replies to that often customary expression that can hit us harder, right? Could say the usual “fine,” “not great, but I’m here,” etc. But what did I say?…

    “I’m like a sunny day at the beach!”

    (All four of them started laughing–not sure if it was the comment itself or that and also that we are nowhere close to the ocean).

    Another idea if I’m feeling very poorly: “I’m like a balloon without air in it.”

    I’m actually still smiling over it (instead of ruminating about the fake word of “fine”).

    Want to credit those two tidbits to The Hallmark Channel and the movie, “Love Under the Stars.” They were actually said by a child, but since I tend to grab stuff from everyday life, I found a place for it that worked well for me.

    Right now, rain is about to set in, and the balloon is deflating, so-to-speak. But at least it’s a withering balloon with a smile on it.

  13. Jan March 6, 2016 at 5:48 pm #

    And Richard, if I’m writing too much on your blog, do please let me know, as I want to be sensitive to and mindful of that. (Never enough time to investigate initiating my own blog. And really, I prefer yours).

  14. Christopher March 7, 2016 at 1:26 pm #

    I would get into trouble if I said I’m a sunny beach… especially because I tend to mumble.

    If anyone doesn’t get that right away, it’ll hit you after a few beats.

  15. Sue in TX March 8, 2016 at 9:52 am #

    Ah Christopher, you’ve brought up the fun of mondegrens! My speech was also affected my MS and I found it amusing at times when a silly miscommunication happened. I started noticing that it can happen when people have different accents (Texan vs non Texans 🙂 ) I figured there must be a name for it, and found it – mondegren. Now I notice them all the time in the news or day to day. And it usually gives me a chuckle. Recently an npr journalist reported on reduced tourism in the Middle East. On assignment The American journalist rushes up to a passerby and shouts out “how’s the tourism?” The passerby says “the terrorism?” “Yes, the tourism” the reporter replied. If you say tourism in English with a middle eastern accent, you can hear the similarities. The reporter never caught on. I laughed hysterically. Glad to know the speech of non MSers get misunderstood too.
    Jan, I like your suggestions on how to positively reply to people who ask how I’m doing, but there are days I might reply as Christopher has indicated… I’m feeling like a sunny beach. 😉
    (Jan let Richard know ok to pass on your contact info to me)

  16. Jan March 8, 2016 at 7:18 pm #

    Christopher and Sue, you two likely made me laugh more than the true expression did. And, come to think of it, THAT would certainly surprise those church greeters now wouldn’t it, and give them great reason to escort me inside, haha.

    Sue, I will do just that.

  17. Ann March 10, 2016 at 8:31 am #

    Sue, Jan and Christopher,

    You all have me smiling ear to ear this morning. Thank you Richard for providing this forum to speak and share.

    I have been informed I have high blood pressure. In the realm of my MS problems you would think I would just role with the punch. Unfortunately my father had 7 heart attacks at 50 before they got him stable. Much as everyone here my husband and I are partners in the MS crime. After reading about high blood pressure. I have got to deal with 3 things. (This is my attempt to be proactive)

    1) I must stop drinking
    2) I must lose weight
    3) I must stop smoking

    Of course all three I enjoy (maybe not the weight). I will accept any kind suggestions to begin any. I am praying when I stop drinking, I may lose weight.
    Someone suggested a book to help quit smoking on this blog and I would appreciate the name an author again.

    Don’t expect miracles but I think doing these three things will help in life. I look forward to your suggestions. I will not begin for about a month on the smoking because I need to get my head around it.

  18. Christopher March 10, 2016 at 2:58 pm #

    Ann,

    Those are all good things to do, but please stop smoking as soon as you can. It makes MS progress faster, and makes the symptoms worse. This has been scientifically proven. The free radicals in cigarette smoke cause dysfunction of the blood-brain-barrier, so any repair to the myelin never has a chance.

    As far as advice… it’s just a matter of stopping and never picking one up again. There really aren’t any tricks, shortcuts or secrets. It’s pretty straightforward, and difficult–kinda like learning to drive. It takes about 3 months to break a habit. Took me a little less than that. Try to stay away from triggers; like first thing with first cup of coffee, when bored, or after big meals or when drinking. And just be aware of your routines. Many times smoking and drinking go hand in hand, so it makes a really strong trigger that you have to try to replace with another (hopefully healthier) habit. Ask for support too. Friends and family can help to remind you what you’re working toward, because sometimes we all can forget and/or the goal can seem really far away. Forget e-cigarettes. It’s like teaching someone to swim with a life preserver on. And they are actually a lot more dangerous than is portrayed in the media.

  19. Sue in tX March 10, 2016 at 5:27 pm #

    Ann, those are great resolutions for sure. But definitely approach one vice at a time. Richard’s tweet today talked of a friend who faces the pressure of her progressive disease with grace. That’s it, there is pressure from being chronically ill and hell if I don’t try to face the physical weakness, pain and losses with grace, but sometimes I do choose to treat my brain synapses to the immediate satiability only a bag of kettle cooked potato chips or a ice cold beer can provide. Since I have that self awareness, I do take inventory about the reason I want it. If it’s physical pain or feeling hopeless, maybe I tell myself this treat isn’t best for the moment. I don’t want food or alcohol to be my go to coping mechanism. I don’t want my kids to learn bad coping skills. I try distractors like a favorite tv show, Pinterest, or emailing friends. Exercise is helpful if feeling physically up for it. Meditation over a tasty hot teacup helps quiet my mind and center it. I also went through a phase of logging everything, exercise food etc on a free app. That was helpful to hold me accountable and if I had a good week, Id splurge on a treat. Overall, I think the key is to feel what void you are trying fill and that helps to intellectually understand why you have addictions. The next step I think is respecting the feel good aspect in the brain that these addictions cause, and mindfully chip away at them. One can try replacing it with other more healthy feel good behaviors. But be proud of the pressure you with stand now from MS and my advice it to just aim to make improvements slowly. Good luck to you!

  20. Jan March 10, 2016 at 9:14 pm #

    Sue, I echo Christopher and Sue. To their comments, I will add:

    1. I enjoy some wine on some weekends (1-1 ½ glasses max of typically red and far less so, white). Alternative: green GT Kombucha. Try it the first time, and you’ll think I’m nuts (I thought that of my husband years ago. Come to think of it, he still has great capacity to drive me nuts, but that is another topic!) But I got used to it and actually like it—by the sip. Maybe sip it in a wine glass.

    2. Weight: I believe in lifestyle eating, not in diets — that means permanent changes. We used to totally love milk; now, I wouldn’t like it (and we don’t get congestion with any colds). I go with unsweetened vanilla almond milk (H.E.B. brand—Sue, you will recognize that) in my oatmeal. And “So Delicious” vanilla coconut creamer in decaf coffee. I try to keep sugar very low (but no fake sugar; no bad stuff like aspartame, corn syrup, etc).

    A friend sent me “Against all Grain” by Danielle Walker, and I like her banana porridge and zucchini muffins (but just make them on occasion). Veggies are better than carbs. My store was out of almond butter (don’t like peanut anymore), and another shopper suggested SunButter-love it on slices of apples, celery sticks. I avoid wheat and bread but will eat some Ezekiel toast. Terry Wahls #1 provides good ideas.

    3. I’ve never tried smoking, but my late dad smoked, and my father-in-law, who we brought here permanently this week to a “care facility” from two states away was a chain-smoker of Camels. He so far isn’t taking the patch. He did two stints of three weeks in rehab some years ago without smoking—has no choice here. So maybe don’t give yourself the choice?

    On another note, years ago I used to pick at and bite my cuticles and fingernails (my mom still does) and tried without success to stop. But I haven’t done that for years. So what made the difference? My mindset—once I came to terms with a few things, including being comfortable in my own skin, it has never been an issue. And I probably also focused on other more positive things.

    And I’m fooling myself about leg atrophy in that walking around the house and only occasionally in the grocery (I often use scooters) isn’t enough. A PT friend suggested ankle lifts (stand, then stand upward toward toes) and (as did my husband) squats (need to do correctly), plus stretches. I prefer my work. I need to do this as yes, I have MS, and no, I’m not in my 30s (or even 40s) … so you’ve inspired me! (Feel free to hold me accountable).

  21. Jan March 10, 2016 at 9:15 pm #

    oops… that was supposed to be addressed to Ann.

  22. Jan March 10, 2016 at 11:11 pm #

    Ann, the other book my friend sent me is, “Practical Paleo” by Diane Sanfilippo… now, I am not Paleo, but the book has lots of tips of food, supplements, and the “whys,”and I think it is educational… but still trial and error, I think.

  23. Jan March 11, 2016 at 8:48 am #

    Ann, another thing on my mind: I always read food labels (as in always): I myself look for low sugar, decent protein and fiber, and the absence of stuff just mentioned, including carageenan:http://goo.gl/wMvuRr (my friend told me about that one). I’m not as fastidious as I think some others may be, but I do watch.

    And as with MS (and parenting), I do not think there is any one right solution or just one simple book to follow. Self-education (but not time wasting), experimenting.

  24. Jan March 11, 2016 at 2:44 pm #

    Ann (and Richard)… my apologies for all of the entries… when I was at the grocery just now, Ann, thought I’d also mention that we mostly eat at home. When we go out, it is to a nice place. No fast food. No fried food.

    And before anyone replies with, “no fun,” we eat very well and like it. And we spend a fair amount on groceries. It’s really not that hard (but costlier) to eat well than unhealthily. gtg…

  25. Jacob Mula March 12, 2016 at 1:19 am #

    This inspiring moment didn’t just give birth to an extraordinary movement, it was the start of extraordinary social change. 

  26. Christopher March 13, 2016 at 3:20 am #

    What?

  27. Sue in TX March 13, 2016 at 5:29 pm #

    How many times have I bemoaned the fact that there is no sarcasm font or emoji !!? So unfortunately, Sarcasm continues to not translate well into print. But I think that vulnerabilities do, and kindness, empathy, as well as grace extended to others. However, I agree, Forums are definitely better If lots of perspectives are given. So let’s roll!

  28. Jan March 14, 2016 at 11:50 pm #

    “Who we are” seems to involve pain or harder circumstances that will not heal. Got a knock at my door at 7 a.m. from the police, kindly informing me that my husband was hit by a car and in the ER (and they brought me his mangled bicycle).

    Yes, much pain and a break in his back. But thankfully, he looks to fully heal in time. I suppose I handled it okay because I’ve been here before and also learned throughout the day that he will heal in time. A temporary hiccup from a bicycle passion; not a permanent issue.

    But I did crack up the nurses when one asked about my cane (thank you to the one with the “Quidditch retort,” as it gave some a good chuckle). So, for all life can be so precious — and perspective, to me. is important in working with/helping others.

  29. Jan March 14, 2016 at 11:52 pm #

    Oh, and “Spring BREAK” doesn’t need to be taken so literally!

    • DianeT March 15, 2016 at 7:22 pm #

      Jan – what a relief to hear your husband will recover from the accident! Reminds us all to count our blessings. Now the caregiving roles will switch for awhile – or find a mutual balance, as Richard has said.

  30. Jan March 16, 2016 at 12:29 am #

    Thanks, Diane… and yes, for a while a total switch, or as I think about it (because I don’t ask for anything–just can’t participate in a lot of things), a total caregiver and care manager — lots to do. He’s in a ton of pain and tomorrow will be day three of the hospital.

    I do think this incident will change perspective for both of us: his understanding of being truly stuck; mine, in time, in learning to not overdo and to know what it feels like to watch a loved one in pain and struggling (but temporary/rather severe v. chronic and variable).

  31. Jan March 16, 2016 at 1:00 am #

    …and in the case of my husband, it is really the hope of it being temporary. So now we are both similar in that neither really knows what the health future will hold.

  32. Ann March 16, 2016 at 2:57 pm #

    Jan
    I pray that you and your husband will both find the strength to manage his healing. May you both be blessed with the sanity and laughter to blend your care-giving and care-receiving for each other. You both will be in my prayers.
    My husband informed me today that he will be retiring the 24th of this month. Even though he will be welcome company for me, I am off to find new health insurance that we can afford to pay for as well as use. It is a scary mission for me.
    So count your blessings Jan for you and your husband and think positive that his recovery will be complete until you are proven wrong. No time for that worry now.

  33. Sue in TX March 16, 2016 at 5:39 pm #

    Jan, I was sorry to hear about the accident, but thankful your husband will recover! It reminds us all of perspective. Let the world continue on while you and your family focus on his healing. Sending you prayers much positive energy.

  34. Jan March 17, 2016 at 11:41 pm #

    thank you so much Ann and Sue… this is the first time I’ve had all day to sit for a few minutes and just to myself, sleep deprived and way more tired then what is healthy.

    …and I’ve had some interesting thoughts about perspective — let’s just say that I think everyone on this blog with permanent health issues should get a big hug from discovering how to deal with life, cherish and appreciate other people, and strive to understand where other people are coming from rather than telling them they should be this or that…

    kudos to Richard for initiating and encouraging talk with verbiage such as, “I feel, in my experience, this is what works for me, i’m sorry you feel that way,” and trying to understand and relate without judging. I think that has meaning to many along the path of this life.

  35. Jan March 18, 2016 at 8:19 pm #

    And to Richard re self-absorption: perhaps it involves pushing the limits without true regard for others around us, be it for people with health issues or those who are healthy, both.