What I am learning is that life is hard. Not in a morbid sort of way, though some would say that is the case too. Life is hard in the sense that right when you can get back on track, back on the path that seems hopeful and has light beaming onto it, something — something — will come along and move you off.
I guess when I felt better, felt like I was moving forward in July, I have naively thought since then, “The hard part is done. The hard part has passed.” I felt light and free and so so happy. Going through a diagnosis of multiple sclerosis, having different attacks, not being able to have children, getting a divorce — gosh, I can keep listing but major life events can alter a person and it altered me. “But surely that has the be the hard part. Surely that time has passed and things will be easier now for at least a bit.” That’s what I thought. But . . . life has a way of surprising you too.
This past weekend I went on a hike to Dobie Mountain. It was hot, like heat index of 110-degrees hot and I know I’m not supposed to be out in that as heat can trigger multiple sclerosis attacks, but hiking makes me feel calm and good and whole, and it also gives me exercise which is beneficial with MS . . . so I took the risk; there were more positives than negatives.
What I didn’t think much about was the fact that a portion of my left shoulder had been feeling a bit different before the hike. Different, at the time, I couldn’t even explain but none-the-less noticeable. Still, I wanted to go hiking, I needed to go and clear my mind and become more sane . . . so I did, I left.
Since then things have been sliding downhill. I’ve been stressed and unhappy about personal things (which I won’t get into now or possibly ever) and it seems the more I get upset and let this affect me, the more this “different” feeling has spread. From the portion of my shoulder to my entire left shoulder to my upper arm, down my arm, and now my left hand, even parts of the left side of my back — all the while still maintaining each site, just taking over additional areas — I now know how to describe this “different” feeling.
. . . If I’m honest right now, I’ve been looking at my computer screen for the past several minutes wandering what to say next. It’s not that I don’t know what to say — I have a lot to say. It’s that I don’t know how to, I guess, start. In fact, I’ve wanted to have this conversation with people in my life but because I don’t know how to start it and because they have been too busy, I just haven’t. It’s hard — opening up and talking about this. It is hard. It’s not that I feel I’ll be judged because I’ve never been one who is affected by others’ judgements. I guess it’s tough to be that open and vulnerable and talk about something that affects you, at times, heavily. Because for me, having MS is embarrassing. It’s something I try to hide and most days act like I don’t have it or that I don’t even know what it is. I barely even give my own family updates because it is embarrassing for me to talk about. Beyond that, it is can also be upsetting. I think about crazy things sometimes, like if I met someone really special, would I want to date again? Would I want to date knowing I have MS? I think about all the things that may happen to me with this diagnosis and how my life would inevitably change . . . which means this other person’s life would change . . . and that’s when I get upset because I don’t want someone to see me in any other way than “strong,” I don’t want someone to have to support me or feel stuck in a situation or change his future or plans or dreams. So sometimes, I get upset because I know I would purposely sabotage anything good that may come. More than that though, the feeling that overrides all is fear. I think back to the beginning stages of my blog — when it was about food and being newly married — and I promised myself one thing: the truth. I simply wanted to write about the truth and not hold back. And I guess I still want to . . . though sometimes, the catch is that I’d rather not admit the truth so it makes this harder.
Alright. So, this different feeling that has been spreading is numbness which can equate to paralysis.
This — this one simple word — has been my biggest fear from the start of my diagnosis. Yes, I was scared when I was first diagnosed but that was mostly from a fear of not knowing. Once I learned about MS and what could happen and the medicines and treatment, I felt better. “Knowledge is power,” they say, and I think that’s why my diagnosis didn’t affect me as much as maybe it should have. People, amazing amazing people, will send me messages saying how strong I am or that they are on my side and pulling for me and I feel so incredible humbled to read those messages . . . while at the same time detached from them. I’m not stronger than you. I’m not stronger than the person sitting next to you. This is just my life and so I am forced to keep going. You have different stressors that “attack” your body, too . . . and that’s your life and you must also keep going. There’s no way I or you or anyone else can compare what we go through so to me, I think you are equally as strong. Saying all of that, maybe ‘strength’ is what actually pushes me and you and everyone else forward. It is just now dawning on me that maybe I have been looking at strength wrong. The ability to cope with reality — maybe that’s the definition of strength.
Yesterday, I went on a long walk to think about things — where my life has come, where I am now, where I want to head. And I thought about this different feeling in my arm. Never have I cursed MS or been angry or upset for having it. I’ve always thought, “Some people are diagnosed and I am just part of that ‘some'” . . . but the more I thought about it yesterday, the angrier and more upset I got. Is there ever an answer to “Why me?”? I’ve never asked that question before, even if other things happen in my life. I have simply accepted knowing it is me and bypassed the question entirely as if it didn’t exist. But right then — on that walk — that’s what I wanted to know. Why me? It’s not as if I want to suddenly not have this disease and give it *poof* to someone else — even the most horrible person in the world. I don’t want that. I don’t want to be the cause of that or, more importantly, have life be like that. But I would like to know “why” . . . maybe why as in the cause of MS . . . as in “It’s because your mother ate a certain fish when she was pregnant with you” or “You went hiking on a day when the heat index was too high to handle and it triggered a small attack into a larger attack” or “You give every fiber of your body to things you want and that just equates to hurt which equates to stress.” I guess what I’m saying is for the first time since being diagnosed, I really want to know the answer to one question: Why?
There may come a time when I’ll get an answer, when a cure is developed because then people will know what causes MS. But we aren’t there now. Where I am now is with this different feeling in my arm which feels like when you’ve been outside in the freezing cold and you come back in . . . and it’s that moment you put your cold hands under warm water . . . that moment right before it starts to tingle and hurt . . . that moment where you don’t actually feel anything. My left arm feels like I’ve slept on it wrong and I need shake it or move it around to get the blood circulating again . . . because it is asleep. Most of my thoughts have been taken over with “Do I feel this?” and “If I pinch or scratch or do whatever to my arm here, will I feel it?” and so I’ve been running my hand over my left arm and scratching and pinching everywhere. I know that’s probably not a good thing and it seems foolish now writing it, but I need to know. What I’ve learned is that I think I can still feel . . . but I’m not certain how much I am feeling based on my right hand and how much I feel based on my actual left arm. I’ve thought about taking something — a pen or pencil or whatever is close — and touching my arm . . . but again, the fear of not necessarily wanting an answer has stopped me from doing that. What if I don’t feel it? I don’t want that answer. Another answer I don’t really want to know deals with the weight of my arm. What I didn’t expect was this heaviness, how my arm feels hard to lift. I have been throwing both arms into the air, straight above my head and I feel like my left is copying the right solely because it knows it should. But it gets extremely heavy so I let them both fall. I’m wondering if this is how paralysis feels — the ability to have a limb but lose connection to it. To think that you cannot move it anymore because it will eventually feel too heavy to lift. To simply not feel it anymore. So I keep moving and using my left arm and doing more things with it so that I know it is still there and can move and can work. But I’m not sure if the numbness stops here or if it keeps traveling or how much more intense this feeling will be. And that’s what I’m scared of the most.
I guess I’ll end on two things: Today, this very afternoon, I’m going to the neurologist. I’m grateful they were able to squeeze me in within a couple days notice. Mainly because it turns out my neurologist is going to medical conferences away yet again (he does this more than being in his actual office treating patients) . . . oh, and his nurse practitioner that I feel in love with and started seeing over my doctor — she’s now left the practice now too. This means today’s appointment is with a new neurologist as I’m passed from one hand to the next in a stereotypical move of I’m-the-patient-assigned-a-number-and-not-an-actual-person. But this is fine. I feel hopeful actually that this doctor could be there for me when I need. Another thing I’m hopeful about is talking to him about this feeling and possibly having IV steroids again because this more rapidly treats attacks. Plus, the steroids may benefit my eyesight from December which has still not returned to what it was. I’m also hopeful because I’ll talk to him about oral medicine to combat this disease. I’m really excited about having this talk because I’m realizing more and more (the hard way) that I do, in fact, need to be on something. So today, there’s potential and hope.
The other thing I want to end on is this: A simple thank you. Thank you for listening because right now it comes at a time when I have felt alone. Thank you to the one person I have avidly opened up to and I hope he reads this and knows it is him; I will update you soon as I promised. Thank you for those that know me and have found I’ve been not myself recently; thanks for having patience still. But mostly, I feel appreciative to have an outlet to write, an outlet to talk openly, an outlet where there are ears in the world that I have never seen. You are amazing and it is you I thank most.