Losing Self-esteem

The assault on self-esteem comes in small skirmishes that add up.  When Lily was in high school, we dropped her at JFK for a trip through Europe.  She and I went into the terminal while Meredith parked the car.  “You wait right here while I get my ticket,” she instructed firmly as she dashed off to do battle with a ticketing machine.  Yes, Ma’am, I silently said.  Shouldn’t it be the other way around?  I had the uneasy feeling that I was with my sitter, and she was instructing me to behave myself.  My daughter was eighteen.  I was legally blind.  It did not feel right.  The memory stays with me.

This was not the first time I felt my physical limitations undercut my image of myself as a strong parent.  Self-esteem suffers when a father feels the loss of parental authority.  Humiliation can quickly follow.  I have written before about the pain of feeling like a child.  This is nobody’s fault, only a predictable consequence of living with a disease that can make a strong man weak.

A flight home from San Francisco had made the same painful point. I’ll meet you at the plane, I told her, hobbling off to buy a newspaper.  I began my walk toward the gate,  looking for shops I had focused on earlier to mark the trail.  My lousy vision is as problematic as my limited ability to walk.  I eyed a fork in the concourse ahead that had escaped notice coming from the other direction.  It seemed to pop up out of nowhere.  Now I had to guess which road to take.

I walked what for me was a fair distance.  My legs began to shake. I began to feel tired and recognized nothing.  I did not know where I was and began to sense a familiar anger rising in my head.  A slight panic mixed with strong self-recriminations.  How could I have let this happen?

My cell phone rang.  “Where are you?” Meredith asked, concern in her voice.  I chose to hear that as impatience.  I don’t know where the hell I am, I half-shouted into the phone.  “Tell me anything you see,” she instructed softly.  Stay there, she told me after I identified a nearby shop.  “I’ll find you.”  The familiar feeling of helpless dependence washed over me.  I felt so small.  Don’t let me out of your sight without a babysitter, I instructed bitterly.

Once again, I had been reduced to a childlike adult.  On the long flight home, I sat wondering why needing the help of another feels so emasculating to me, as if I am less of a man when these things happen.  I have to somehow force myself to remember that I do many things well.  I function efficiently and effectively, and that is what is important.

As my condition worsens and my body takes leave of me, I need to hang onto all I have accomplished.  I was not merely a passenger. I have to stop allowing my worst fears to define me in my own head.   I know I am deeply fearful of losing cherished independence.  Control left long ago.  Friends and acquaintances tell me that when they look at me, they only see my strengths.  I seem to be the only person who looks at a cripple when I pass a mirror.  Some memories die hard.

 

11 Responses to Losing Self-esteem

  1. Brian June 11, 2014 at 8:42 pm #

    Once again you have described my life with a gift of eloquence that I’m really jealous of. I’ve always been the type that doesn’t want to be a bother. Sometimes it drives me to try and do something for myself (so that my wife doesn’t have to), but I mess it up because I shouldn’t have tried to do it in the first place, and then she has to fix what I messed up, and then do the original task. That’s when I feel the most helpless.

    • Richard M. Cohen June 12, 2014 at 7:26 am #

      Brian-

      A familiar scenario.

      R.

  2. MB June 11, 2014 at 8:51 pm #

    I can no longer drive so I hired a driver to take me to and from work. I miss driving but I can’t because I knew I was putting other drivers in jeopardy. My decision helps me to maintain a level of independence without having to depend on my family to get me from point A to point B.

    I can no longer walk so I now drive a scooter. I hung on longer than was safe for me. My husband and kids would hold their breaths every time I stood up because of my frequent falls. Now I just go about my business without causing anyone in my family to go prematurely gray.

    So the question is, why is using a “crutch” perceived as a sign of weakness instead of a sign of strength? I guess it’s all in how we interpret the word strength.

    • Richard M. Cohen June 12, 2014 at 7:30 am #

      Of course you are right, bur certain items like a crutch probably always symbolize weakness. ut isn’t the important variable how you see it? In the end, others do not matter.

      Best,
      R.

      • MB June 12, 2014 at 4:23 pm #

        Or how those you love see it. If they see you functioning better and more independently with it, I’m willing to bet they see it as a sign of strength.

  3. jeanne June 12, 2014 at 4:27 pm #

    My dad was left paralyzed after a surgery and I thought he was the bravest, strongest man in the world. I’ll bet that’s how your wife and children think of you ,too.

  4. Yvonne June 12, 2014 at 5:31 pm #

    I used my walker for the first time outside my house today. I usually try to make do with a cane but my teetering was bordering on death defying. Image is everything and the image in my head hurts more than anyone watching me stride along with my walker will ever know. If one more person said “you look so well” I would’ve screamed. The transition from cane to walker is harder to accept than expected. That’s why I come here for support from people who understand “I look so well” but I feel like crap! Still hopeful I can get back to a cane. Never thought I’d miss the cane

  5. nancy s June 12, 2014 at 5:55 pm #

    …typing through tears but saying thank you for all that are saying what I am also living. Never thought of my cane as showing my strength but hate to rely totally on others. I need to get over my objection to a walker but there are so few places to sit down when I am tired.

  6. Mike June 16, 2014 at 5:59 pm #

    I was Dx at 22 by 27 I “retired”. I thought it would be nice to only have to “work” on fighting MS. Easier said than done. Now at 38 I am not fooling anyone and certainly not winning any fight. It has been like an eleven year weekend. I continue to be my own worst enemy. Low self esteem is definately on the list. It does not help to have married an attractive woman. Looking back it would have helped more to have married someone lower on the numerical chart. You know the saying 4’s marry 4’s, 8’s marry 8’s, well I’m a 4 who married a 9. Hence, it can do a number on your confidence when out in public you get the looks and can hear the thought process “is that her brother, jeez they have wedding rings on, how did that happen?!?”. All joking aside, every day is a challenge to remember who was that person all those years ago. Life is a grind. I doubt I will see a cure. I am just trying to play the game with these terrible cards I was dealt.
    Mr Cohen you have done this dance a lot longer than I have. I try to read everything you write, as a road map. Without effort you are a trailblazer, leaving breadcrumbs so we don’t get lost. Thank you for showing that it can be done, one half step at a time.

  7. Andrew Sisson July 7, 2014 at 4:43 am #

    My wife finally said she was ready to stage and intervention over my falling issues if I didn’t get a necklace for falling alert (I tried to justify that I try to always have my cellphone with me) or a walker. I dreaded the hunched over shuffle of walking with a walker but a cane wasn’t preventing falls. When my butt gets lower than my knees, my legs will not receive any messages I mentally send to function. I struggle to crawl but have learned to roll toward something on which I pull myself up. I did a lot of research and found a rollator (4 wheels, no legs with tennis balls on them!) that has given me my security back. It was rated best by individuals with MS as able to accommodate varied terrain with ease. I watched a video of a woman walk across a park field, down a woodland path and out onto beach sand. I was sold. It is unusual and sporty looking so I don’t feel like a total geezer. The large wheels actually do effortlessly handle changing terrain. Most of my falling was outside in our sloped yard, going to the mailbox or coming in after dark.
    The model is made in Sweden and called Volaris. When it was shipped, it arrived with a small supply of wallet info cards to share with inquiring observers–I gave out 4 in the first 2 weeks. This rollator allows me to have upright posture with plenty of room for my 6’1″ gate. I discovered I was far less tense and preoccupied with looking down at the ground and tenuously taking every step with a pause to make sure my leg was secure to lift my foot for the next step. I now can walk on area hiking trails, walking paths and almost anywhere. I can sit if the fatigue gremlins suddenly wallop me. It is light enough to fold and pick up to carry in a vehicle but sturdy enough to actually allow me to maneuver myself up from the ground should that occur. (I haven’t fallen since I got it, but I did experiment with it inside our house to see if I could use it to pull/push myself up from the floor.) I recently acquired an electronic pedometer and have actually achieved a record of 16,000+ steps in a day. I am easily making my daily goal of 5000 steps. I haven’t been able to do this outside for years. My forced exercise on a treadmill at the gym holding onto the rails just wasn’t the same. It has a simple technique for easily stepping up curbs but not excessive stairs. I am more active, independent, and my wife is so grateful that I let go of false pride to allow myself use of an assisting device. I recently went to a large outdoor concert and fireworks show on July 4th and maneuvered crowds and parking lot/sidewalk/grassy field with ease. I was even able to sit (brought a cushion) on it for over three hours and walk more briskly to the restroom than I can remember being able in a long while. I didn’t get up and dance like some attendees, but I felt so happy to be able to go and do something I wouldn’t even attempt for many years prior. I must emphasize that larger than normal wheels are the magic difference from the standard walker/rollator along with a subtle shock suspension. Volaris is expensive but much cheaper than some models I also looked into and much cheaper than any hospitalizing injury.

  8. Laurie July 26, 2014 at 4:02 am #

    Richard,

    Perhaps Lily’s memory of the day she left for Europe was her parents were both there for her. You could have stayed home, but you were there for your daughter!