I have such a wonderful family. I always knew they were cool, but I have seen how every member of my family has sacrificed something to take care of me, Many sacrifices are long term and continual. Sometimes a really fun thing has to be skipped on my account, but they are champions for dealing with it the way they do. I know a lot of people who “know someone who cares for another person” but most of these people don’t see the day to day dealings and frustrations that families face.
Thought I was trouble before? I am no longer allowed to drive. In the last 7 days I have had four doctor appointments, a visit to the ER for my daughter, an allergic reaction to medication, and two pharmacy visits. That is all stuff that my FAMILY had to drive me to! No one complained when I frantically ran around the house needing to get my daughter to the ER to close up a laceration from a stray burr on the oven, they knew I felt helpless because I couldn’t even help my own daughter because of my health. My stepdad hung out in the waiting room while I sat with her letting her squeeze my hand. We went home after two, and he had to be up in 6 hours for work.
I feel unworthy of such love for me and my child, but my family shows me constantly that our love as a family will rise to any occasion and meet it head-on. While I feel like so many things have been taken away from me, I have been given enough support to cover every loss. I count myself blessed to have such a team of people around me who keep me going and carry me when I am too worn down.
THIS is a Support System. It isn’t just my family, I have friends I can call, associates, and complete strangers who are willing to assist me. Yes, I am a grown woman with a teenager, and my parents take care of me and my daughter. I used to hate it until all of my money ran out and I could no longer give them money, or pay my own phone bill, or buy socks. I actually ask for these things now and it has made me a much more humble person. They could have forced me to give up my own phone bill and get on their account, but they understood how it would hurt my pride and they bit the bullet.
By NO MEANS are we rich. We know how to be frugal. I know how to cook from scratch which can save a good amount of money. We save money every way we can, and we still get to go to the movies and shop, so, it’s a balance.
So, this is what breaks my heart; people who go through chronic illness or chronic pain alone or with toxic people around. This is something I see in some friends of mine and in groups on social media. It is close to impossible to walk away from whatever situation I find myself in if I come down with a case of unexpected neurosurgery or incapacitating pain.
Some people get SSI or SSDI right off the bat, but many of us wait longer. It has been over two years since I first filed. I am waiting for a hearing date. Meanwhile I am making no income. So, I know there are others out there like me who find that the resources run dry. I assume only a portion of them have the luxury of moving back home. Some of the people I know who chose this option deal with family who almost feel obligated to let them stay but are not welcoming at all. A few are acrimonious.
A few have spouses. Some of those spouses try their best to understand and sympathize the issues associated with the chronic life. However, some spouses are a stain on humanity and do not believe or tolerate the disability. So, you have to live in the slim space of being sick without it bothering the person who finances your life and medicine.
There are some who have nowhere to go. They lose everything in their life, they lose themselves in the pain, and life can take some weird or even dangerous turns at this point. The streets are no place for anyone.
This all begs the question, “what do you do about it?”
I mull this over every time I go to the doctor and leave with no answers. I consider it when I am in the MRI housing. I ponder it when I am on the phone for three hours trying to find a referral that got stuck in Ohio and was not sent back to Las Vegas. I marinate in it when I am in the ER and I see people there alone, while I always have one or two people with me,
I look at my church as an example in this area. One of us from the Helps ministry will be there with you at the hospital. Usually for as long as it takes. Might have to sleep in ICU for five nights. Might have to go to another state and care for someone. You might have to go be there during the dying process. you may have to feed someone who is injured or otherwise incapacitated. There is this shared responsibility for the welfare of each other that I don’t know if it exists in other churches or other types of communities…but it should.
Las Vegas has a lot of people who come out without family and they need support in their lives. When things happen to them, one of us will stay with them and someone else will help arrange for family to get here and get to the hospital. If I have to stay overnight with someone, there are shifts of people who bring me food or whatever I need. It is beautiful to watch such a large response of love toward a single member of the church because we are all that important. Everyone gets that treatment, even new members, and at times non-members. People deserve kindness.
I challenge you to be more supportive of the people in your life that are going through something you don’t understand. Most of the time all you can do is listen and bring them things, and often that is what they need. They need to be heard and have their feelings (WHATEVER THEY ARE) validated so that they know that someone cares. Sometimes that means helping them meet a need. I know that no one wants to part with their money, but sometimes people need help with simple things like toilet paper because their meds cost went up.
The best part about a good support group is that EVERYONE is willing to give as much as they can when needed, even if everyone doesn’t have a lot of money. Supporters give time, attention, encouragement, and friendship as well as any kind of financial help. There are some people in my circle that are well off and all I can do is make them soup when they get sick. I can’t throw money at the flu just like they can’t. I will sit and listen. Talk if conversated with and leave promptly because supporters also understand that people need rest to recover.
Supporters understand when you look like you survived a tornado and are forgiving of a short temper or a poorly thought-out comment. This of course NEVER implies that one can treat supporters like servants or pests, rather, this is the occasional slip of tongue which is also apologized for.
The best part is that a good support system offers cheerleaders for every victory as well as a soft place to land after a loss. A good support system is woven through love and experience and you can only be in a good support group if you are a good member. Be the change you wish to see (Not sure who said this; could have been me, could have been Hammurabi).
The Life of a Music Monkey 