I’m finally writing a post. It’s not one I’m looking forward to. I’m facing who
I am and putting it out there. Sure, I can nice it up a bit, but I said I was
going to be honest about myself from the beginning and I see no point in
putting a fake persona of myself out anyway. I’m also having a hard time in
general finding words to describe myself and basically just write. It’s not
just free-flowing from my mind like before. So here goes.
I have had several obstacles in my way of getting this post out, but the main
reason is what I have to say about myself. I’m speaking for myself here but I
think it’s common for most people with this type of terminal illness. You get
to know yourself better. It becomes harder to deny the parts of yourself you’ve
spent a lifetime perfecting denying. I do want to give myself some credit. I am
a person with a genuine good heart and care for others. I’m also a real shallow
bitch, and the truth hurts. Let me explain a bit more with examples starting
with a little background.
I have ALS, there is a cure on the horizon which I won’t live to see. For
anyone reading my blog for the first time, I was in the phase II study by
Neuralstem Inc. and had 4,000,000 stem cells injected into my cervical spinal
cord. Feel free to go back in my blog and read much more about my experience. I
was lucky to be part of this study, having things falling in place by being at
the right place at the right time, meting all criteria, including just making
the limit of having ALS no longer than two years. You know, some people ‘seem’
to have these experiences more often in life. I don’t, yet I won the stem cell
I don’t think I deserved this great opportunity and I’ll explain why the best I
can, but please know I’ll just be scratching the surface of this belief and it
will still be plenty.
I have some difficult losses that I don’t foresee ever getting back. I can’t
walk. Let me mention I wasn’t one of the three in this study to get lumbar
injections as well as cervical, which isn’t meant to help the legs. Guess what?
I did have some very unexpected strength improvement in my legs. I have a
stronger left leg giving me the ability to transfer. This is something people
with more extreme muscle loss and paralysis can’t do. I could do this with my
left leg before surgery although it was steadily declining. My legs are also
where I’m losing what I gained faster. I was still given more time with this.
Trust me, ask anyone with ALS who has lost the ability to transfer on their own
just what a big deal this is. It’s not perfect for me. It’s best if I can
transfer from certain angles and sides, but I haven’t fallen yet.
The thing is these benefits aren’t what I focus most on. I’m thinking I’ll
never strut my ass in 6″ heels again and look good doing it. Also remember, I
love my husband dearly and I’m not 22. This is a nice example of realizing how
shallow I am. I truly never knew I wanted that feeling so much. The loss of the
ability to walk, to me, means I’m ready to at least see the towel I’m going to
Next: Before receiving my injections, my right hand was going down. This is
where I’ve had the most progression come back above legs. I have lost some
strength in my right wrist/hand/fingers but it’s loss of dexterity in my
fingers that has cause the problems. The frustrations of dropping things. What
makes it all so real and scary is that it’s made wiping my ass difficult. Loss
of control and dignity in this area is something I’ve always known would be a
huge deal for me. I’ve made it clear to my family that I will lie in my shit
non-ending before they clean me. I will no way allow my children to do this, or
parent, or sibling. The only people who I will allow is my husband, shame on
me, or a professional no one in the family knows. Outside professional care is
very expensive. I’ve been told I’m denying my family the ability to help in
such a way. I even understand it. I just won’t go there. I can’t take it. Major
guilt. I know this won’t change though. For the record, it’s not because of
some strange anatomical deformity and I have no herpes sores I’m ashamed of. I
just can’t have it. So it takes me a lot longer and many cleaning wipes are
involved. I’ve asked for help twice from my husband. I’m so thankful. I also
feel terribly guilty and gross. He handles it so well. I worry about him. I
love him so much. I want to hold the proverbial towel now.
I have felt extreme despair that I’ll be leaving my adult children way too soon
in their lives, There is so much of my grandchildren’s lives that I won’t see.
As much pain as this thought has caused me, I don’t let them in this nightmare
I’m living like I should. Like they want and probably need to be for their own
dealing and healing in this. I’m not saying I’ve cut them out of my life. There
are visits. There is text communication, but I do have my hands out. “Don’t
come to close to all this, I don’t want you to feel the complete impact.” I
mostly have myself convinced it’s for their emotional protection, but when I
allow myself to really think about it. I think it’s more of some fear part on
my end. I’m not ready. I don’t know that this is fair though. I love them so
much. They deserve the extra time I’ve received from the stem cells. Time to
let them in more before I’m gone. I can’t leave them feeling helpless.
Another reason why I don’t deserve the benefits of the stem cells. From early
on I’ve come to know several people living with ALS online. I don’t feel part
of the club anymore. It’s not a club any one wants to be a member of, but if
you’re in the situation, there are many benefits. You can give and receive
support and learn many tricks to deal with issues that pop up. You get all the
secret homemade tools to make life for person with ALS and the caregiver help
you along. I haven’t but have expected to be turned away at the door at any
time. Membership revoked.
I’ve scratched the surface of my very shallow thoughts turned to anger and
despair over the losses I’ve had. Now, let this sink in. I know several people
who are at the end. It could be any day now. I look them up most days in fear
to check and see If another life has been cut short. These are people who can’t
move, they are paralysed. the are either on 24/7 non-invasive ventilator, or
have gone on to a full invasive trache. They’re often in some degree of
physical discomfort or pain. They’re alive and so thankful for it. they use
their Eyegaze device to convey positive thoughts, to talk about another person
with ALS and how they are doing great at advocating and staying positive after
I’ve just spent hours angry that I can’t jump in the car for a ride, or shake
my ass. They often can’t move one finger. These are the ones that should have
received stem cells in time for this not to be. They deserve more quality and
quantity of time. Not me. Not shallow bitch who advocates by participating in
trials with unspoken hope of benefit. My biggest contribution that has only
hope for future patients is that I do endure, usually screaming like a child,
getting lumbar punctures for the, Validation of Biomarkers Study. This is
important and a great help to research. I give myself credit, but I still don’t
deserve the stem cells.
I have also stopped communicating with about every one on a private basis too.
Just stopped. To those who have reached out to me with no reply back as usual,
I want to give my sincere apologies to you. Most of them, I sat in front of my
laptop trying to reply. I don’t know why I couldn’t find even the simplest
words to reply. It had nothing to do with not caring. it has been a strange
I have to end this by saying, deserving or not, I am proof that we have a
genuine, true treatment for ALS. I know we have a few stem cell trials out
there now. Stem cells made from your own skin, and others. I hope for these to
have as much success. I can only speak for the stem cells I received in my
cervical spinal cord that are from Neuralstem inc.
It’s been 14 months now. I know without a doubt I would be much further
progressed without them. This isn’t just my belief. It is clinically
documented. The clinical data of the study results are supposed to be published
by the end of January. I’ve read a phase III trial will begin shortly with more
participants. I wish we could skip it and go on to have this available to all.
There are people still living with improvements, time and quality of life,
since phase I. This should be available now!
I want to thank everyone who participated in the ALS Ice bucket Challenge. Much
needed money was raised world-wide and is funding research, and many more
people were made aware of this horrific condition.
I’ve expressed here before that I’m a very private person by nature. I just
gave a very personal glimpse into my thoughts and feelings. I expect there will
be harsh messages, more than usual. I just want to say I know I will feel
overwhelmed with lots of nice messages also. Please don’t feel the need to
express how I really am deserving. It will stress me. I know who cares, and
Again, I hope to blog about my move to a flat new home, including pictures.
Deserving or not, my life is much better here. If I can put this out, I can
surely manage that soon. I’m not going to bother to give a time.
So you all know that I know, I’m fully aware you are completely entitled to
your opinion of me.
Thanks for reading and take care,