My Feelings

Posted: February 27, 2014 in ALS Related
Tags: ,

 

I need to let out some feelings I’ve been dealing with. I’m just going to let loose. Any writing order out the window. I’m writing my feelings, my thoughts as they come to me right now. Just go with me, please.

I was very lucky to have my neurologist offer me the opportunity to participate in the Neuralstem, stem cell study. Even better, I’ve experienced really positive results from it. One would think, including myself, that I would have nothing but overwhelming joy 24/7. I mean if there is something to feel great about, it’s benefiting from a clinical study for ALS. Something that researchers and patients have hoped and dreamed about for well over a century, to no avail.

I am overwhelmed and grateful for what I’ve been given. It can also be overwhelming in other ways too. I don’t feel I have the right to complain or have a bad day. when I do, I feel very guilty. I see a person who has ALS with a young child and think I don’t deserve this, they should have this so they can be with their child longer. I’m sure my own adult children don’t agree. There are many adult milestones to come. I do want to be there for them. Go ahead, do the math. I had children at a young age, I’m from the south, I fit into a few stereotypes. You can underestimate my intelligence if you like.

I get angry at myself for not feeling positive every second. Then I tell myself I haven’t been cured, I can’t be and do everything I could before ALS. It’s OK to be upset that I still have this terminal illness. It  Doesn’t work. I get angry that I’m in a wheelchair for almost any trip out. I want to walk, I want to run. Now here is the real kicker and the one I get most angry at myself for. I feel so damn ugly and fat. I guess I had put more importance on that than I like to think I did. This one really brings on the guilt. Not to mention, I shouldn’t be really focused on that so much even if I didn’t have ALS. I’m 41 not 21, almost 42 and I have a husband who loves me no matter what. Again, I think how dare I have these feelings, when so many would never be focused on looks or any petty thing.

Some people don’t even acknowledge me. I was in line with my husband the other day and a woman said to him, she has very pretty hair. What the hell? I had been talking to him intelligently, handling my bag and other items. So does being in a chair mean to this woman that I’m not worthy of speaking directly to, or does she think wheelchair equals idiot? I never acted like that  to a person in a chair.

I don’t like the stares and situations I mentioned. I think back to not long ago when all I wanted was to have the wheelchair accessible van so getting out would be so much easier. I haven’t had it that long and I’m already complaining over a couple of incidences that infuriated me when I should just let it go and experience how great it is having more freedom. Believe me, it has been great. So why let little things like that upset me? It brings me back to, I don’t deserve this mode. Then I see other people with ALS who are always so damn positive. But really, are they that positive behind closed doors?

I saw a man on TV this past Sunday with ALS. His dream, after being diagnosed with ALS is to hand out doughnuts to children. He said he was happy that ALS gave him this new perspective on life that he otherwise wouldn’t have. It showed him documenting other people who have found this silver lining from having this disease.  They were glad they had it so they could experience this awakening. It was on the television show, Sunday Morning. The man is from, I believe, South Carolina. Get in touch with me if you read this and know him, or if you are him. I’d like to understand this mindset. It seems inconceivable to me knowing that ALS is an extremely horrible way to go.

I have mentioned positive aspects of the way I am progressing. There are advantages to having one whole side much better than the other for several reasons including the ability to transfer easier, I feel positive about the amazing results I’m experiencing from the study. I have never felt positive about having been diagnosed with ALS, or had any great awakening. In keeping with being honest, I’m asking myself what is wrong with these people? Lying, crazy, in denial? I really want to know.

I’ve written some of my feelings. I don’t feel angry everyday. I’m extremely appreciative of many things, and I do have fun any chance I get. I feel happy, lucky and encouraged by the changes I’ve experienced resulting from the study. I still haven’t mentioned it all yet, there is more. I am part of something huge in the future of treating ALS. I will feel great when it’s available to all. I just need to express the other side of my feelings and life with ALS in this post.

I’ve also had a lot of wonderful messages from people with ALS and caregivers, I appreciate this so much. It’s part of the fuel that keeps me going, keeps me fighting. I still do not see the silver lining, feel a great awakening, or feel happy that I have ALS. I just don’t. I’m glad these people can feel that way, they are lucky. I can never say I feel lucky seeing the world from a death by ALS perspective. I would not be telling the truth, and I don’t get it.

I’m baring a little of my soul here. Some may find my feelings selfish, feel anger towards me, or maybe feel it made sense in a way. I just needed to let it out, and this is where I do it. As I say on my home page, I’m not here to sugarcoat what I’m dealing with. However, whether I’m happy, sad or mad, I am always 100% in the fight or us all.

Thanks for reading about my inner thoughts and some demons I wrestle with.

Until next time, take care,

April

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Comments
  1. Karen Duffy says:

    April, you are completely normal, and real, and honest, and I appreciate every word of your latest post. I’ve seen the super & always positive people with ALS; I’ve seen those who do not want contact with anyone after having been diagnosed; and everything in between. You are doing so much to help others — and yourself — navigate this terrible disease. As you know, you will have good days where you feel up, and bad days when you feel down, angry, confused, or empty. All of it is part of this “new normal.” It is what it is…not fair, but all part of it. I look forward to every post – until next time…peace.

    • aprilals says:

      Karen,
      If I don’t write honestly and in my own way, there’s no point in keeping it up. I’m very glad people see my honesty and accept my, sometimes quirky, no holds barred (usually) writing. Most importantly, this is a way for me to spread ALS awareness. I get questions from people that come across my blog, They haven’t been affected by it in any way, but have heard ALS, Lou Gehrig’s disease throughout their lives. I want people to know there’s no one face of ALS. It starts and progresses in different ways and different speeds. It always ends in death though, and we need a treatment/cure. It’s long past due. I know I’m not telling you anything you don’t know, I just want everyone to know. Thank you for your kind words. I’m at a loss for words that you look forward to every post! Coming from you, a person who knows ALS so well, it really means a lot. Thank you

  2. Mickey Johnston says:

    April, my name is Mickey aka Shy Tuna (on Facebook). I have ALS and thank God for it. My life has improved so much since my diagnosis 3 years ago. But that is just me. I’m a 52 year old, retired guy. That would not be so without ALS. I am a Air Force Veteran who draws a nice disability. Money is not an issue. It used to be before ALS. I am a slow progressor, and can still drive and do most things myself. I have a great life with hundreds of friends that support me in any way I need.
    Everyone with ALS is different. I totally get where you are coming from and hope you get where I am coming from. I’m like a man with no hands who just met a guy with no arms. Just my thoughts…

    • aprilals says:

      Hi Mickey, I’m glad you feel positive about your diagnosis. I imagine it’s nice to retire at 52 and have you’re money issues go away. It’s my suggestion you save some of that money because even slow progressors eventually need very expensive equipment and care. Unless you die of respiratory issues, or anything else, the day will come that you have no hands, arms, feet, legs along with many more losses. It’s not my intention to come off as rude in any way and I hope you don’t take it that way. I hope you have many great days and years ahead. Thank you for sharing your experience and thoughts of your journey so far with ALS. April

  3. Patty says:

    April, you need never apologize for your feelings. I understand completely how you feel. And I am one of those positive people… Most of the time. I certainly do have my bad times when I get really down about having ALS. It seems that, during those times, I just don’t have anything I want to share on the blog. As for finding a silver lining, I have to say that there are people in my life now that I might never have known otherwise. I am a Christian. My faith enables me to give thanks in all circumstances. Am I happy that I have ALS? Absolutely not! But I know that everyone dies. I would eventually die of something. And who knows? It might not be ALS that gets me. People have heart attacks, strokes, fast-moving cancers, etc. all the time. Most likely, of course, it will be ALS. But I know where I am going. And I know my goodbyes are only temporary. This helps me cope and stay more positive. That being said, I still get teary from time to time. ALS is a cruel disease. Keep on fighting! And thank you for sharing so honestly. Patty

    • aprilals says:

      Hi Patty,
      I think its great to be positive. Some days it comes easier than others which I have a feeling you can relate too. I have also met some great people, and as much as I adore them, I’d give them up in a second to have never been diagnosed with ALS. I sometimes struggle with blogging too. at times I just don’t want to write or even think about it. I’ll admit to sometimes avoiding writing because I don’t think I can without lots of language that would be offensive to a lot of my readers. Then I get upset because I said I would hold nothing back. I really don’t want my blog to be full of some of the words going through my mind, so I usually wait until I have a better grip. If I let totally loose during these times, I think it would take too much away from my message.
      I was raised in the Baptist church and I know what faith can do for a person and I’m glad you have that comfort. You’re right, there’s a chance something may kill me before ALS. Being in good health otherwise, short of a major catastrophe, ALS will be my demise. I have lots of fight left in me. I’ll keep sharing honestly and with the clean version as much as possible. Please keep sharing yourself. You send a strong message of your life with ALS. I have a great appreciation for your easy reading writing style. I, like a lot of things in my life, tend to take the long way around. I don’t like to read old blogs, hate seeing the mistakes but don’t want to change them. when I do, it’s not uncommon for me to need to read a short paragraph 2 or 3 times. I realize I could have made a point so much easier to read with much fewer words. This reply is a good example I’m sure. I just get on a roll. Hope you don’t have to reread too many times. Take care and thanks for reading my ramblings.
      April

  4. Thanks for being honest, April.
    I also saw that Sunday morning segment on that man. I totally get what you’re saying. I see both sides because I’ve lived both sides – I’ve been angry and frustrated (with this horrible disease) and I’ve been at peace and had an upbeat attitude. The latter is much better for myself and my loved ones. Many people with terminal disease have said that the disease has been a blessing because it’s changed them by putting things in perspective. I understand how that could make others (with that disease) angry. But I don’t think they’re minimizing the horrible impact of the disease; I think they’re just thankful that the disease caused them to reexamine they’re priorities… I confess that I am one of these people, but I HATE this stupid disease just as much as I did when I was angry and frustrated. Do you view this as a contradiction?

    • aprilals says:

      I guess technically it’s a contradiction, but a normal one. I have also experienced both, the anger and frustration, then there’s times of really feeling hopeful and enjoying my day. I know you’ve been dealing with this longer than me. It seems, from reading your blog, you’ve reached the point of a great deal of acceptance. That’s not to say you still can’t have bad days. My priorities have been reexamined and I actually like the pre-ALS order better. I do also get what you’re saying. I think we’re on the same page. What got me fired up that day is hearing them say they were happy to have ALS. I’ve calmed for mine and my families sake. If your priorities are that out of order, there has to be a better way than an ALS diagnosis to work on them. Sadly, many won’t live long enough to benefit from there new perspective. If you have ALS that becomes you and your families priority, I haven’t found that so great. I really am glad that the man who the story focused around has been able to experience such great happiness. I don’t have to understand him to be happy for him I guess.
      April

  5. Hey April,
    You are the most positive person I know. You had to have some kind of tough attitude to do the stem cell surgery. I honestly would be worried about your mental abilities if you were ‘happy’ to have ALS. Personally I think I would just give up. When I was/am depressed about something I see the ‘shrink’ and he/she gets me back on track.
    Just want to tell you that I have a lot of hope for you.
    As always, always interested in you and what you have to say (even though you are from the south lol).
    Yours,
    Richard Roehl

    • aprilals says:

      It always throws me when someone tells me I’m the most positive person they know. I strive to stay positive, but it certainly is a battle some days. I would have probably said the same thing before I was diagnosed and just knew about it, but it brought some inner strength I guess I’ve been storing. I’m glad you’re interested but lets leave the south out of this.
      -Them are fighting words where I come from!-
      lol, I’ve always wanted to say that.
      Thanks for reading.
      April

  6. Greg Martin says:

    April, While its tue that ALS is a terrible thing, what’s also true is that terrible things like this can cause a person to look at life differently. I don’t have ALS but I have had pain since about 1999 and I can tell you I’ve found joy inside of myself like I’d never known before. How’d I do it? I saw Lana Lensman, an alternative therapist, for 1.5 years twice a week, jumping into an exploration of my own mind. I found places inside my mind that you see pictures of, you know the pictures of saints with halos over their head, well I’ve felt that, just typing in the words now brings tears to my eyes. The words used in Buddhism of enlightenment and more, well I found that too. Everything fits now. And do you want to know how it all started, it started as you are doing now expressing exactly how you feel. Lana just listened, did not judge one way or another, so ultimately I found another place to judge from and that was from the light inside myself. Its a place so beautiful that one can almost forgive all the pain experienced, but at least bring a wonderous understanding of ourselves, of the world, and help alleviate some of the pain we feel. In the end I discovered Lana had taught me or a partnership had formed where I had taught myself how to meditate and do it as good as it can be done, bringing light to darkness.

    I found you since I’m an investor in what I hope heals me, stem cells! Glad they’re helping you!

    ~Greg

    • aprilals says:

      Hi Greg,

      I definitely look at life differently. I’m very glad you have been able to find such extreme inner-peace. Sounds amazing! First of all, I have a feeling I couldn’t afford to see Lana twice a week. I’m more in the $19.99 self help book money bracket. I work some on meditation since there will come a day that skill will be very helpful. I’m so thankful the stem cells have set some time back for me. I have great times still, and I can enjoy myself. My life is still very different than before ALS. I have my share of bad days. I don’t know if I could make the complete transition you have. I don’t know if I really want to actually. The way I am dealing keeps the fight in me. We all have our ways. I appreciate the good days and gain strength from the bad.

      I hope you find what you ultimately need to heal you.

      April

      • Greg Martin says:

        It has been expensive, maybe 20K with everything I’ve done. It doesn’t necessarily take money, just doubt, the possibility that another perspective is possible. as in..what if I could? As to want to? of course no one wants to change, hardest work I’ve done…thing is you’re already doing it! your blog is good, yes? 🙂 btw, I don’t reside in a perpetual state of joy. That light inside is a place for me to fall back on, my baseline happiness has been increased, still can get mad as hell, just don’t hold onto as long. Lots of love, keep sharing the gritty stuff. ~greg

  7. Bill says:

    Get mad. Tell “it” you’ve had enough and it has no place within you.
    Let peace flow in, it is not in our hands, but we are being held as you can not imagine.

  8. ScrewALS says:

    My wife, 43, was diagnosed about 2 years ago. Progressed quickly. On a vent for almost a year. Eye movement is only thing left and that’s starting to falter. Told she may get “locked in” soon – unable to communicate at all. How will we know if she’s in pain? Cold? Has an itch? I’m told we can decide to take her off the vent if that happens. How the hell do I make that decision and live with myself? What do I tell our 3 young daughters?
    Anyone who says their life is better since ALS is insane.

  9. Joe Rauh says:

    Hello April,
    My name is Joe, I do not have ALS. I am 62. I read your blog over and over again. I am semi-retired, but still struggle with the bills. My first wife, whose name was also April, passed on from MS about 10 years ago. I re-live many of my experiences when I read your outstanding blog. I thank you more than I can express.
    I’m writing in hopes that I can maybe add some input for you. I’ve found that the lows and highs have to balance out. The nasty lows can only be counter-acted with highs. Finding these highs are not easy to see when you’re down. My April and I started digging out of our depression by re-examining what we really had control of, and what we did not. Her MS was of course something we did not have any control. We did have control of so many rewarding things that were not apparent at first. We took an true Epicurean approach, on small items that so many just do every day without enjoyment. Our attitude, and how we let things affect it, was something that we did have control. One of the best ‘highs’ that we had were our shared laughs together. We would try each day to have at least one good laugh where we could laugh out loud and share that joy with each other.
    Timing is everything, and I hope and pray that I have said these words at the right time for you. Please forgive me if I have not.
    JoeR

    • aprilals says:

      Hi Joe,
      There is no wrong time, but it is a great time to read this. It sounds like your April had a great husband like me. I’m so thankful for him. We do similar things that help us both. Same as you, we try to find something to laugh about daily. Laughter really is great medicine! The thing is lately a lot has been going on and we’re off. This works great when we have a routine going. He’s been very busy lately and we’ve had several other unexpected things thrown at us. Of course this is just life. It leaves me feeling helpless because I can’t run upstairs and do things like I used to, or jump in the car and take care of something. I’ve let this get to me a lot lately. Things are calming and we were just talking about this tonight, now last night, I just haven’t slept yet. Things are looking up, but I never know what I may need to work around on any given day, but we’re definitely planning and bringing the laughter back.
      I’m sorry you lost your wife. I want to thank you for being a thoughtful caregiver to her. Caregivers are often overlooked when your dealing with the disease too and take on much more responsibilities. Thanks for the kind message. Take care of yourself.
      April

  10. Cliff says:

    April, started drug study yesterday, only 36 hours since first I’V, so far no side effects. Second I’V in 48 hours. Feels good, like a little more hope! Will keep you posted. Your ALS Comrade!)

    • aprilals says:

      Hi Cliff, sorry it took so long getting back to you. I’m glad to hear the first IV went well! That’s a good sign. I so hope you have benefit from it. I completely understand the good feeling of a little more hope. I get that feeling participating in anything, even the ones I know hold no direct improvement for myself, but it is helping research. Please do keep me posted! I am very interested in how you continue doing. I’m sure other followers are too. Thanks so much for sharing! April

  11. Cliff says:

    April, glad to answer any questions, family history,(Al’s for 150 yrs, mother, sister, nephew, cousins,aunts. Average liie span 12 months). I am about 8-9 months out, still walking, talking, left arm is working but getting weak, right arm is gone, breathing is 75 per cent. I think the Riluzol and Inosine ( uric acid) have helped to slow the Al’s. Look forward to hearing from you.

    • aprilals says:

      I can’t say I know a lot about familial ALS. From what I have learned, it does seem to usually have a fast progression. You mention the average has been 12 months in your family. I can only imagine losing so many family members and always wondering about yourself, then noticing the signs. I’m sorry for all your losses. I hope the study you’re in is the end for you and your family. I’ll be thinking of you! Your ALS comrade! April

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