“The kind of beauty I want most is the hard-to-get kind that comes from within – strength, courage, dignity.” ~ Rudy Dee
When I was first diagnosed with multiple sclerosis, I was filled with so much hope for about two years. Then flare-ups emerged and I began to feel as if something was off. My faith slowly started to fade. As my symptoms got worse, my confidence and bravado was being slowly stripped from me.
I’ve always been a strong person but MS has made me feel weaker than most and after a major exacerbation and years of worsening symptoms, one of my biggest challenges now is trying to maintain my dignity.
At the present time I need help with almost everything. When I go to the bathroom in the middle of the night, my husband wakes up to make sure I am all right. He has to help me hook up and empty my catheter. Sometimes it’s two to three times a day. It is very hard to keep your dignity when you have to ask someone to help you do that.
I realized that retaining dignity requires time and is experienced only in a context of empathy and mutual confidence. I have been lucky; most of my friends and family are very empathetic and still display confidence in my abilities. My problem is I need to work on strengthening my confidence in myself.
I once was able to pinpoint exactly where MS was residing in my body. I knew my weak point was fatigue in my legs.
Nowadays MS is effecting every essential part of my being including my psyche. This seems to play a major part in my lack of confidence. I can no longer predict where MS will affect me. I may go blind in my right eye for a few hours or start feeling sorry for myself and not want to leave my room. I might fall to the floor as my legs give out or not be able to get out of bed because I’m to tired.
How does one prepare for that?
This disease has become such a mind game it makes me crazy. The constant uncertainty is becoming insufferable.
Someone posed the thought of surrendering to this new normal of mine. This state includes no walking, occasional confusion, memory lapses, weakness, and infinite fatigue. It seems like a lot, but quite frankly, I thought I had already surrendered.
To me this falls into the realm of acceptance, adaption, and accommodation. All things I have already checked off my “to do” list. Okay, I have my moments. I do recognize I am a work in progress. I now realize that I have put myself in harm’s way for the sake of doing it on my own terms. But surrendering to this state takes things to a different level.
I confess I do carry a rather large chip on my shoulder. Everybody can’t see it, but it’s definitely there. It’s mostly in my mindset. I guess it would be freeing to let go of that. Like dropping dead weight.
For me, surrendering does not mean I’m being stagnant. It doesn’t mean I would stop taking my medicine or therapy.
It does mean I accept what is, while at the same time maintaining my dignity.
I live a hermit’s life except for my husband and my elderly mother. Although they know I live with ms they have never altered their expectations of me. So very often I appear to them as being not able to do my job running the house and taking care of them. My sense of dignity dwindled. But I’ve worked at the parts of this that I have control over and now I am no longer affected by how undignified I may appear to my husband and my mother. I can’t make them carry ms with me, but I can stop being ashamed of how much I struggle to carry it alone. Ms hasn’t just taken from me. It has made me a better person. I want to get healed, for sure, but I’m no longer afraid of where the road leads.
I just found you! You are an angel. Your words are so well expressed. I am struggling to with thenow diagnosis of SPMS after 9 years of RRMS. Newly divorced and single Mom of two kids. It just seems strange to find so much in common with everyone here.
I think you are right. A lot of dignity has to do with how other treat you. I had a Gyn. visit Monday. The office is not handicapped accessible. I needed help with everything: my husband wheeled me to the office and helped me up the 4 steps; he helped me undress and get on the table; the Gyn helped position me on the table and helped me off; my husband helped me dress again. A stranger offered to help get me back down the stairs in my chair. My biggest issues are severe fatigue, severe lower body spasticity and weakness, ataxia and constant dizziness and vertigo. I did not feel undignified at any time. My husband feels I am crazy not to find a doc with a handicapped accessible office, but the kindness and compassion of these doctors to preserve my dignity is worth the trouble of the visit.
Maybe there is dignity in losing your dignity with grace. I have gotten over being mortified being dressed, helped into bed and out, having someone bath me, empty my catheter, help me onto a commode and off and even wiping my butt, having my meals prepared and served–and especially not doing anything around the house to release some burden from my husband. I do have a caregiver that comes five days a week for four hours a day, She does my stretching and range of motion exercises, gives me showers, dresses me {including compression hose and braces on both legs} and does a little cooking. We are extremely fortunate to have long term care insurance that covers my caregiver. I finally got over being helped with every single thing that needs to be done, both naked and dressed. All we can do is cope with it and manage to enjoy the things that we can.
Your dignity shines through loud and clear to others because of your natural class, grace and honesty. MS can never/ will never take that away.
loss of dignity is the final indignity. bravo for putting into words what so many of us are thinking.
I always enjoy reading your posts. It speaks exactly what Im feeling.Thanks for sharing your most intimate thoughts and feelings with us. It makes my heart so full.
Harriett
Amen and amen. From this particular reader’s point of view… yup, that’s the MS path indeed. Even for those of us who don’t “walk” it from our wheelchair. It’s hard.
And that’s the challenge before us.
Life is always interesting, ain’t it?
Hi Nicole,
I read your blogs every time you release a new one, sometimes even at 2 in the morning. I was diagnosed about 2 years ago. I’m on a leave from a job I’ve always wanted and it’s hard to accept that I’m most likely not going back. But we are more than what we can or can no longer do, right? I’m going to take up horseback riding. Have you tried it? I think I need the diversion of a new challenge. Thank you for being beautiful. I hope I get to meet you one day.
Blessings with you as ever. I try to be dignified but sometimes I have to hide.
Please know that I am right there with you as we traverse this unknown territory of MS. Thank you for your beautiful blog posts which always make me and many others feel understood.