Why I Have Been Thinking About Getting A Cane...

It wouldn’t be permanent!

I know that is what you are thinking. Because before I even became disabled and met my friends with disabilities, I would have thought the same thing. This cane would be temporary or a “use as needed” type of thing. I have friends with POTs and other debilitating disabilities that have had to use canes, wheelchairs, braces, walkers--only temporarily or as needed. It is apparently a very common thing for people to use. Because people who have disabilities have good days where they don’t need to use anything to help them and they have fucking terrible days where they do need help.

One of my friends (they/them/their) who lives with POTs, has used a wheelchair for the past 11 or so years. They first used it all the time--that was their only mode of transportation because their illness had flared so bad that their legs were too weak and shaky to walk. I didn’t know them at that time because we were both in separate High Schools. But when we met in college after I had started the disability support group, I learned a lot from them. They started having more good days or at least didn’t have the worst of days--enough to use their wheelchair. So, they only needed to use it as needed--which was about twice a year.

It honestly blows my mind how abled people are so blind to things like this. I know I was. I learn from my friends and how they have had to live their lives.

There have been a few times where I was texting my friend and telling them about how I was feeling. I was telling them that I could barely move, was in pain and was feeling so weak. I could barely walk. I was so exhausted that I could barely move. Then my friend was like, “want to borrow my wheelchair? I can bring it to you.” I was like, “Nah, I can make it. I can push through it.”

I just don’t think I was mentally prepared to use a wheelchair to help me move. But I should have taken my friend up on their offer because I barely made it back to my second story dorm room. That is just one example of when I should have taken the help andI should have used the wheelchair. But I just was not mentally prepared to.

Now let me refer you back to an article called, “My Legs Have Failed Me (Health Update),” from September 23, 2016. Read that right now....

And there is another reason I have been thinking of getting a cane. That was one of the scariest moments of me feeling completely helpless, that I wrote and published a blog post on it! That was probably one of the worst times my legs have been so weak, shaky, numb, and in pain.

The reason this issue comes up for me recently is because I have noticed that in the past couple of weeks (and occasionally since I published that post I just talked about) I have had trouble walking. Not that this is a new thing but I thought if a friend of mine can have a “use as needed” wheelchair, why can’t I have a “use as needed” cane?

Especially, since I think it will help. If it doesn’t then I can just bring it back to the store or give it to my dad...

I know people won’t take me seriously or think I am just full of myself. I don’t really fuuucking care. If you are one of those people, don’t expect much communication out of me. I think I know what my body needs more than you. And trust me, I really don’t want the extra help--from a cane or someone like you, who is trying to tell me how to live my life. But sometimes I may not have a choice.

My legs get weak, shaky, painful, numb and tingly, you try walking like that. Fuck. It is so difficult. I have had to walk like that A LOT. Especially, in college when I had a more demanding schedule. I had to walk everywhere on my college campus feeling like that. It was only one part of my hellish college years. And guess what? It has still been hellish. I thought that once I get out of college, everything would get better. Nope. Some-not-very-many-things got slightly better and others got worse, and completely new even worse things have come up...

I digress--

There are even fold-up canes that people can put in their purses or bags. They make them for people to use as needed. I am a part of several online and Facebook support groups and chats for my POTs. Honestly, it is the place I go for my BIG questions about my POTs. Because I know the docs won’t be of much help. These docs haven’t lived with POTs, they haven’t experienced like I do on a daily basis! So, talking to billions of people who live with POTs is quit spectacular and just another reason to have the internet and why it is a positive outlook for people who need help from other people. The support groups that I have been on, all the people have been very kind and friendly. If they weren’t then someone always says something, which rarely happens.

The point of me mentioning the usage of the several online and Facebook support groups and chats for my POTs is because I took my scary feelings and questions to people that live with POTs everyday. This is what I posted on May 14, 2018: “How many of you use a cane or crutch for your POTs symptoms (weak and painful legs)? When did you decide to get one and why?”

Here are some of the responses that helped:

• “I stumble a lot when hot so a cane helps.” yass. me, too...
• “I bought one last week after 2 years of trying to do without.” sound familiar?
• “I use a cane. The one I have folds up so I can have it with me in case I need it. Mostly I use it when standing in lines because standing still is harder than walking. And when I am having what I call a ‘wobbly day’ which often involves intense vertigo, randomly falling over, and running into things.” yass, yass, yass. All the fucking time…
• “This is the unfortunate truth. It’s so much easier to get help without argument or judgement if you’re using a mobility aide.” Then I won’t have to bother anyone...or fall over from being stubborn…

Do you see how these are perfect examples and literally the exact thing I needed to hear??!

All of those comments along with some friends advice made me like super excited to get a temporary cane and they all also validated my opinion and idea to get and use one! These people make me feel like my problems are normal.

There were also a surprisingly LARGE amount of people who live with POTs that commented about their use of rollators/walkers and wheelchairs for full or temporary use. I thought it was only between 12-20% of people with POTs. But know I am thinking it is a LARGER number. Which saddens me but also makes me feel that my feelings and symptoms are super 100% valide. I still have a lot of irrational doubt that nobody thinks I am actually a sick person. That someone, if not everyone thinks I am full of shit and faking it…

So, please let me know what y’all think about this? Yah or nah? Wait or don’t wait? List to them or say fuck them?

I will be talking to my cardiologist about this, within the next couple of weeks.

Memorial Day

A few years ago, I was asked to speak at my hometowns' Memorial Day service. My dad spoke and then I spoke after him. It is one of the things that we have in common, public speaking. Since tomorrow is Memorial Day, I thought I would share the speech I gave. So, here it is:

"We are all here today to remember those who bravely sacrificed themselves for our freedom. They were all loved by someone and some of them were loved by us, in this room. I personally have not lost someone close to me, fortunately my father came back while he was in the Marines. But there are many other children around America who have lost a mother or a father, and they will never forget all of the wonderful moments they have had with them. And they will not get any more of those moments with them. Because that is the price we pay for freedom, and safety. I honestly think that many Americans take that for granted.  They take freedom and safety for granted. Many do not realize how many lives have been affected just so they can safely walk down the streets in America. But this is why we have days like today, a Memorial Day to not only remember the countless Americans who have died for our freedom but to be reminded of those young men and women who fought and died for OUR freedom... To be reminded that they were Americans just like all of us, who fought and died in some foreign land.

A few years ago I spoke at Lakeview’s Veterans Day program, I also talked about how we take things for granted and that instead of one day, Veterans Day, we should thank Veterans every day or whenever we get the chance to. I bring this up because after I was asked to speak for today, I was mind boggled by the vast differences between the two days. Veterans Day is to thank those who came back, those who fought and survived to come back and live the rest of their lives with their loved ones. And Memorial Day is to remember those who didn’t, for me it was hard because I haven’t lost anyone but I have seen it. I have seen it in the eyes of the survivors, and family members. I have seen the loss. And I see it every year when I come here to this Memorial Service.

I want to leave you with a quote from the former President Ronald Reagan said “The price for this freedom at times has been high, but we have never been unwilling to pay that price. Those who say that we are in a time with no heroes…they just don’t know where to look. The sloping hills of Arlington National Cemetery, with its row upon row of simply white markers bearing crosses or stars David, they add up to only a tiny fraction of the price that has been paid for our freedom.”"