Loss of Independence

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Please remember, and keep in mind -- 
I don't post these things to gain your sympathy or your pity;
I post them so that you can see what the reality is for a person
living with a terminal or chronic illness.
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In the past, I've talked about things that cancer has taken away.   Today I'll talk about the loss of independence.

From the time I went to college at 18, until I got married at 31, I was pretty much on my own.  I lived with my parents for a while, then rented a room in a house that a friend owned.  After awhile, I bought my own house; lived alone for a few years, did everything on my own.  Then I met the man who would become my husband.  Once we got married, we learned, like every married couple, how to balance out the chores and how to live comfortably together.  Some things we still did on our own, but most things we did together.  Once our first child was born, I became a stay-at-home parent, so took on the grocery shopping and such much more.   I came to depend on my husband for certain things, such as yard work and car maintenance, but I still did tons on my own, now with a small child in tow.  Then school started, and with that, parent/teacher conferences, band recitals, soccer and baseball games, and another child.  I did the "normal" mom things that moms all over the world do.

Fast forward to March of 2015, and my terminal cancer diagnosis.  My world stood still for that summer, as I underwent chemotherapy.  I couldn't do much of anything.  The housework, the grocery shopping, the cooking, the bill paying -- everything really, fell to my husband and two boys.  They stepped up like champs and took care of everything, with assistance from family and friends.  When chemo ended, I expected to get back to "normal" quickly.  I've come to realize that I will never get back to my before-cancer self, and am working on becoming the best self that I can be in my situation.  It's difficult, though; I feel as though I am a shadow of my former self.  I am still more dependent upon others than I was before cancer, and still more dependent upon others than I would like to be.

I don't do much by myself anymore -- it's not physically possible, and sometimes it's not mentally possible.  I take my walker with me, to help me stay balanced, and to have a seat for when I get too tired and need to rest.  When I go shopping, I can get only what will fit in one canvas shopping bag.  That sort of bag fits perfectly on the seat of my walker, so I can use it to hold the items I plan to purchase.  When I need the seat to actually sit on, I can just place the bag on the floor at my feet.  I can't shop for heavy items, either.  Big bags of dog food, cases of water, etc., for instance, I need someone else to haul those.

Usually, going anywhere out of my normal routine causes anxiety.  When I do, I need to make a list and make sure I stick to it.  If I don't make a list, I will stand in the middle of the store and feel a panic attack start as I try to remember what I went in there for.  It's just much better all the way around if someone is with me when I leave the house.  I have anxiety about calling in a take-out order to a restaurant these days.  I used to do that all the time!  Now, I much prefer ordering online (not that we are in a position to do that these days).

I need help doing my laundry, as the washer and dryer are upstairs.  I can't walk up and down the stairs.  I do help with it -- I'll sort it out on Sunday morning, my husband will take it upstairs to the laundry room, and bring it down all clean by the end of the day.  I fold and put away, but I really should be doing it all.  I depend on the boys to bring clean towels down for me.

I don't often cook.  More often than not, my husband does the cooking.  Sometimes we are both so incredibly exhausted, we either eat cereal for dinner, or are at the over-exhausted stage where the thought of eating anything causes queasiness.  So, when we have a home cooked meal, usually it's my husband who does the cooking.  Rarely, I will have the energy to prepare dinner.  Not often, though.

I still have not taken the bill paying back.  It causes anxiety, and I don't feel I have the cognitive ability to take it on.

There is an incredible lady who comes to my house once a month to clean the main floor for me.  The boys try, but well....  I do regularly keep the dishes going, and I sometimes am good about keeping the kitchen, my room, and the living room clean, but it all depends on my waning energy level.  I am not physically able to kneel on the floor to clean the bathtub.

My husband built a ramp for me to get up the step with my walker or wheelchair from the garage into the house.  It was done with such love, and it's wonderful.  Our garage was so full, though, it was difficult to get to.  This past weekend, volunteers from Rebuilding Charles County (formerly Christmas in April), along with a few family and friends, came to the house and helped us clean out the garage.  My husband ended up taking two van fulls to the dump, and one to Goodwill.  It's much easier now to get to the ramp.  The volunteers also patched up drywall that was in need.  It was such a good thing.  These are things that neither my husband or myself can physically do anymore.  The volunteers are planning to come back to improve on the wheelchair ramp, although no details have been decided.

I work on the second floor of a high school.   When the fire alarm goes off, and it's not a drill, I need to ask for assistance in getting down the stairs.  I need one person to carry my walker down, and one person to help me not lose my balance.  It's only happened twice, and the elevator has been broken twice, so it's rare; but it does happen.  It's very stressful when it does happen.  I don't like want to delay other people getting out of the building in an emergency.

I depend on rides to my treatments every three weeks, and to scans every three months.  This is because I tire very easily, and the one to two hour drive (depending on traffic) is exhausting.  Also, because of my blood pressure sometimes being elevated during medical appointments, my doctors have told me to take an anti-anxiety medication before I arrive.  I can't do that if I drive. 

These are just a few examples of how I have come to be dependent on others.  It's been more than four years now, and I feel that I've exhausted my right to ask anyone else for anything; I feel that I've used up all the help I should be allotted.  It's difficult to keep asking people for help; people have done so much already.  I feel like such a needy person, and I don't want to be a burden.  To be honest, I kind of feel whiny.  Also, the walker, the wheelchair, and the cane already draw attention to me; having special accommodations really makes me stand out. Everybody is so super nice about it, though, and seem to want to be of assistance (except for the rude people walking ahead of me who see a walker but don't hold the door, but that's another story).

This leads me to what happened yesterday evening.  I want to make it clear that I am most definitely not complaining, as everyone was trying to be helpful, and I am so very appreciative of that.  Sometimes, though, things don't work out as planned.  If I had been able to get to the field on my own, I wouldn't have missed what I so much wanted to see.

Picture this -- You're sitting on the seat of your walker on the sidewalk outside of a high school.  You are waiting for someone with a gator to pick you up and drive you to the softball field so that you can cheer on the girls, and watch their charity game presentation.  You were the recipient last year, and think it's very important to be there to support this year's.  The field is within walking distance.  Plenty of people are walking past you.  You walked last time, but realized too late that it was too much.  You've gotten there five minutes earlier than the allotted time, because you don't want to make the driver wait for you.  You hear music coming from the field where the lacrosse game will take place.  You hear the thowk of the tennis ball as the tennis teams warm up for their matches.  You smell the dust that's kicked up as football players walk past on their way to where they do their spring conditioning.   The sky is a beautiful cool light blue, with puffy white clouds.  Birds are flying overhead.  It's a beautiful day.

Suddenly, you hear cheering from the softball field.  You look at your watch; it's twenty minutes past the time that your ride was supposed to pick you up, and ten minutes before game time.  Which means that the cheering you hear is because the presentation has just been made.  You missed it.  You text the person you arranged the ride with, but he must be busy because he doesn't see the text.  Five minutes after the game starts, you see a gator approaching with someone you don't recognize.  You flag her down and ask her for a ride to the field.  She is incredibly nice and gives you a ride.  She assures you that someone will be by at the end of the game to take you back to the parking lot.

So, you spend time there watching the game, chatting with friends, catching up with old friends, and meeting new friends.  You cheer the girls on, you talk and you laugh.  As you sit there, you wonder what would happen if you needed to leave early?  How would you find someone with transportation, and then ask them?  When the game is over, a staff member pulls up in a gator.  You wait a few minutes, not wanting to be a bother, but then ask if he's not busy, could he please give you a ride to the parking lot?  He tells you that's why he's there, then you apologize for keeping him waiting.  He's not bothered at all.  He is incredibly nice.  So, he drops you off at the parking lot and unloads your walker from the back.  You walk to your van, but since there are no handicapped spaces available (and access aisle), you place your walker to the side, pull your van out, get back out, load the walker up, and get on the road to home.  It's mentally and physically exhausting.  It almost keeps me from going to the games.  Sometimes it does keep me going to the games.  Sometimes, even with all of the assistance, it's just too much work.

Am I upset at the person who arranged the ride?  No.  Am I upset at the person who was supposed to drive me to the field?  No.  I appreciate that they were going to do it in the first place.  I understand that things happen, things come up, people forget; I don't know what happened exactly with this situation, but I know that it was not intentional.  What I am upset about is that I need the special accommodation, that I need to ask for yet one more thing.  I'm upset that I need to add one more thing to these people's already busy to-do list.  It's very discouraging, and I feel that there must be a better way.

So, this is just one more thing that cancer has taken away -- the ability to come and go as I please/need.