My Feelings

Post 9 of 84

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  


 

April

This article was written by April

14 comments:

lucasFebruary 26, 2014 at 10:36 amReply

Hi April
Very interesting article.
I believe that the ups and down are very common for someone with ALS, as i see it with my wife. One day you feel lucky of the things you still have left and the other you are down because of everything you no longer have, whether you are in a Clinical trial or not.
Regarding feeling guilty, you shouldn´t feel that way at all. If anyone should feel guilty, it should be the companies and organizations that are not making everything they can to have this available to all patients, whether it works or not. If currently there are 3 ALS patients that have been able to halt the disease or even get better, then they should be working 24/7 to understand why and have it available ASAP for everyone that is willing to go thru this.
When i read that one company is waiting FDA approval for aprox 6 months for a trial that have already stop the disease for one person, i don´t know if they are negligent or just don´t care.
Thanks for sharing
Lucas

April AprilFebruary 27, 2014 at 4:49 pmReply

It’s true, ALS is such an emotional roller coaster. I have my times of feeling guilty as I’ve written about. I also deal with the frustration and anger that it’s still taking so long for the FDA to approve and fast track trials, especially one showing any benefit in phase I. Time is not on our side and we all should have the right to fight. I totally agree, if a study helps some and not all, get on it to find out why, in the meantime give others the opportunity.
I couldn’t have said it all any better than you did. Thank you, I wish the best for you and your wife.

schmidhoganFebruary 28, 2014 at 7:35 pmReply

I agree with you April. There is nothing positive to a diagnosis of ALS. I’ve also read allusions by some of us afflicted referring to some silver linings to the disease. These people are delusional or just trying in their own way to cope with a withering demise.
I was diagnosed last October. I’m still ambulatory at short distances, speech and swallowing somewhat affected, and breathing already down to 65%. I’m surprised that you are gaining weight. I’ve lost my appetite but try to eat to keep my pounds on. If my appetite doesn’t come back this will be a losing battle. I’ll welcome a feeding tube so I don’t have to eat.
Anyway, just wanted to introduce myself. Alex Schmid

April AprilMarch 4, 2014 at 5:20 pmReply

There is nothing I could get to do, or person I could get to meet that would make me feel like having ALS is all worth it now because I wouldn’t have experienced that otherwise. I have seen things from a different perspective. Nothing, to me is worth an ALS diagnosis. For people who have a different experience and find happiness in their changed, shortened life, I am happy for them and hold no anger at all toward them. People experience and handle things differently, I guess. This is a big difference.
Unless you were diagnosed late, you are progressing pretty fast compared to me. I hope you get your appetite back or a feeding tube soon so you can hang in there longer for further help. It’s such a helpless feeling.
I have never lost my appetite and always found food that is easy for me to eat. Sometimes my mind wants to see that as negative because I’ve always worked so hard to be thin. Every time I look in the mirror I have to remind myself the extra weight is a good thing. I assume you are getting help with your breathing and hope that’s not giving you much trouble as far as getting used to and able to use it. Get calories anyway you can. I suggest going to a supplement store and buying the highest calorie protein powder you can find, blend with lots of peanut butter, bananas and throw another high protein shake in there with ice and drink at least a couple a day, or any other way you find to get mass calories in you. As much as you can. The ALSA can give you some great high calorie recipes that are easy to eat so checking with them is always a great idea. I’m assuming you’re going to a multidisciplinary clinic and the dietitian/nutritionist can offer great advice for high calorie options suited for you. With that, be as least active as possible. lots of couch time watching movies or having visitors. You don’t want to burn those calories. I know, being a couch potato sounds great until you really need or have to be. I hope you get your appetite back and things start looking better for you soon. My best wishes for you. April

jack49March 1, 2014 at 7:26 pmReply

My word, April. You are enduring so much, the ALS, the hope of recovery, participation in a drug trial; all of these experiences are emotionally exhausting. And, you are a pioneer in stem cell treatment which may provide hope to so many other patients with different diagnoses. Generously give yourself the right to express your feelings, and know that your audience understands that your feelings aren’t your character.
We are rooting for you, please be generous with yourself.

Jack

April AprilMarch 2, 2014 at 11:34 amReply

Hi Jack,
I won’t deny that I’m enduring a lot in my life right now. I also know I’m not the only one. There are people all over the world for various reasons suffering much more than I am with no support. I try to keep that in mind; sometimes it helps keep perspective, sometimes not. When in the right mindset, I feel proud of the contributions, clinical studies, I participate in. Everyone has their way of coping with ALS and no way is wrong. For me the studies keep me motivated. Of course I want to benefit, but it does mean a lot to me feeling I’m making a difference for others in the future who will hear they have ALS and other horrible conditions, then be told their treatment options instead of their shortened future or their drastically changed life.
I have been so private all my life and it’s still strange sharing my raw feelings with the world. I put a lot of effort into not holding back in fear of being misunderstood. I hope you’re right about people separating my feelings from my character. This still concerns me when it shouldn’t. My real goal is for people to understand ALS, not so much me. I appreciate the kind words and I will continue with this. April

robbijMarch 1, 2014 at 10:46 pmReply

Thank you for your blog and website. 9 months ago I was diagnosed with motor neuron disease, possible ALS. I am now using a scooter and having problems eating. I vacillate between hoping it’s something else to hoping I get a “probable” diagnosis so I can apply for SS, or stop trying to explain to people.
I have 6 children. My oldest son died 16 years ago in a car accident when he was 10 and my oldest daughter died Nov. 23rd from undiagnosed lung cancer. She was not a smoker. Most days I just pray no more of my children die before me. I am 57. Sorry, today I am feeling down.

April AprilMarch 2, 2014 at 11:02 amReply

I can’t relate to losing a child, I can only imagine the emotional pain. Not to say you don’t think of your son daily, but the loss of your second child is still so fresh. I’m very sorry you’re dealing with that first of all. No parent should have to bury their child.
I do understand the feeling of just wanting to be officially diagnosed. My story is a little different. My local neurologist told me he thought I had probable ALS, but I needed a second opinion which took three months to get. I knew the diagnoses was right. Even though I did have moments of hoping it was wrong. It was frustrating to have people say it’s it’s probably wrong and I’ll be fine, even my husband. I knew it was well meaning, and really more his hope and denial, but it was still frustrating. I was only using an AFO at the time. Of course I’m not going to wish ALS upon you, but if it is the case, I do hope your get your diagnosis soon so you can move forward with SS and get the proper care you need. I hope you have lots of support right now while dealing with so much.
It’s completely normal to feel down some days and it can be hard to imagine ever having another good day. I’ve been there with ALS and I’ve always seen another good day. Be good to yourself and please write me any time, public or private. Thank you for sharing this tough time in your life. More people than you imagine relate and benefit knowing they’re not alone.
April

7thwavepicsMarch 3, 2014 at 9:05 amReply

Your honestly is one of many reasons why it is so important. For those dealing with ALS, patients or family it provides some clairty that they may not get from doctors and other professionals.

I had a visit with Jeremy Williams (from our documentary “Season of a Lifetime”) last Wednesday at his house. On the drive down I wasn’t really sure what his condition was other than I was told he was getting weaker. It certainly wasn’t something to look forward to other than seeing someone I considered a friend, him and his whole family actually. Rick and I hadn’t seen him in over a year but knew he was still constantly texting out his messages of faith via text and Facebook.

We walked in the door and there was Jeremy in his wheelchair with a big old smile on his face. Despite knowing that he has faced tought times and continues to do so it was great to see that Jeremy smile. Jeremy can still move his head but can no longer talk or eat as he has a tracheostomy. The eye gaze system that he uses to communicate was very interesting. I know it was some work for him to spell out the word but he does so quite proficiently. We talked football and family and really just enjoyed each other’s company. Despite the distance between us I was feeling guilty about not going down to see him and I am very glad I dd. If I could advise anyone who feels uncomfortable with seeing friends or family in this condition it would be that it does mean a lot to them.

Before we left I was able to write letters to his kids Jacob and Josie, as well as his wife, Jennifer. Because we had visited during the week Jennifer was at work and the kids were in school. The Williams family has endured so much but in the face of it all, with their faith, family, and a strong community, they still can smile and laugh. I think the key for them is taking each day at a time and be thankful for what they have. Jacob has spina bifada, and Jennifer I believe is in remission with breast cancer. It is a heck of a lot to deal with. Jeremy has said to Rick on several occasions “You never know. I may end up outliving you!” So true.

Everyone afflicted with the evil disease has to deal with it in their own way and I appreciate your sincerity and honesty. I have yet to meet a person with ALS that was a total jerk before the disease. For some reason it finds people who are truly great (Jeremy Williams, Ted Harada, my friend’s grandfather- now deceased, and many others). I think their strength and willingness to help find a cure is nothing short of amazing. Don’t ever think for a second that all you have done and continue to do won’t make a difference because it will.

Thanks always for sharing April!

April AprilMarch 5, 2014 at 2:13 pmReply

It’s great that you were able to visit Jeremy. Seems that he appreciated the visit. I agree with you, don’t be afraid to go see a person in the late stages out of fear, unless otherwise told, it means a lot and can really boost morale. I’m sure walking in to a big smile helped your worries. There’s a unique dynamic to having a person be a part of documenting any aspect of your life. You have access to a place most people don’t. That’s how I feel and assume others do too, so I can only imagine a visit from you and Rick really did mean a lot to him.

It’s also great you left messages to the rest of the family. I’m sure it meant a lot to the kids coming home from school to that, and no doubt to his wife. They are a perfect example to bring up the point, something I plan on blogging about, life doesn’t stop so ALS can always be the primary focus. You still have to deal with other illness in the family, a major crisis can happen at any time just like anyone else, and many other common hardships not associated with ALS.

As you said, everyone has to deal with ALS in their own way and there is no real right or wrong. It sounds they’re handling it their way and the best they can. I hope he and his family experience many more big smiles and laughs ahead, together and with friends.

Thanks for the compliments. I look forward to seeing you soon!

April

chenshuangMarch 7, 2014 at 5:23 amReply

This is a greeting from China ?thank you for your sharing?

April AprilMarch 9, 2014 at 10:52 pmReply

Greetings. I will continue sharing and I hope you continue reading.

Saloon SingerMarch 13, 2014 at 1:23 pmReply

I agree with your thoughts about no silver lining in ALS. I think Chris Rosati who you are talking about with the donughnuts is an exception to what most people would feel having this horrific scene in front of them. I do not know how he gets around it. I felt the same way you do and yet I wrote the words and music about what Chris wants to become not what he is or has. Some how he seems to be able to transcend reality and reach out to others. You shined your light for me to see you and I hear you loud and clear. Nothing I can say to make anything better in your life other than you keep telling everyone how it is with you keep writing and writing about how it feels, sounds, tastes, smells and what it is doing inside your body, You are as brave as Chris for speaking out with the way you feel

1000 Doughnuts Chirs Rosati words and music Brett Basnett
http://www.youtube.com/watch?v=8bPfI4vQ94E

April AprilMarch 18, 2014 at 3:20 amReply

Hi, thanks for commenting on this. I think your music and words fit him and his style well. Ya know, I still don’t understand, but I can say I’m happy for him. Handing out doughnuts is not my idea of happiness, ALS or not, but I’m not him and who am I to say he can’t or shouldn’t feel this way. I guess it’s not my business but a part of me does wonder about his happiness with no camera in sight and he’s home dealing with his failing body. Maybe he just doesn’t want to show that side of dealing with it.
The main thing that really got me that morning was people saying they were glad to have this diagnosis. That I will never, ever understand.
Other than that, I thinks it’s great for people to see all sides and different ways people deal with ALS. It seems his goal is focused on the ability to stay happy by giving to others while knowing what’s ahead for him.
My goal is to show the reality of a life that has been changed in a devastating way and cut short. I don’t want to be negative 24/7, just to be real for my situation. The financial devastation, strain on the whole family emotionally, the fear, so many losses and all the adaptions along the way.
I sincerely hope he continues to give and find happiness through his whole ALS journey!
I told my husband I wanted him to bring me something soft and sweet the other day. He brought me a krispy Kreme doughnut. I did think of him and smile.
Again, thanks for commenting and sharing the music you wrote for him.

Menu