You can not successfully navigate a terminal illness without support. Let me repeat, you need other people to help you in this life; it's that simple. We were advised early on to accept help, to ask for help if we need it, to let people in. For most people the idea of needing help is not an easy pill to swallow, it's a strange feeling when you have been self sufficient and even in the position of helping others to accept support. But please if you have been diagnosed with ALS or any terminal illness or even are having a difficult time in life and you have stumbled across this blog…listen to me. People, family, friends, strangers, you need them. You need them to help shoulder the burden of ALS, to lean on for support, to help you feel motivated and grateful and more than anything else to help you see the good in this crazy world and still want to fight to live; even when your so tired you really just want to give up. We have those people and I thank God every single day for all of them. I am sure you have heard the saying It takes a village to raise a child. Well the same goes for living with a terminal illness. It takes a village to make living with ALS work. In the beginning before you even know you have ALS, when the first twitch or foot drop appears you need someone to hear you. You need to talk to someone, to confide in, someone to tell about your fears…when you need to say them out loud, you need someone to listen and comfort and hope with you that you are wrong. Those close friends and family and co workers were our life line when we were going through the diagnosis process. Those same people were there when we finally got the official diagnosis and then rallied around us, cried with us, felt the huge cloud of fear and disappointment with us and then lifted us up when we really couldn’t even think straight. They listened, consoled, called, came, cooked, and held us. You need these people. Accept them, allow them to be there for you. It is the very first step in your journey and these people are your life line.
As you start to stumble and crawl through the acceptance stages and feel like you need to pick yourself up and start to find a way to see a sort of normal other people will start to find out about ALS. When your ready and there is no set time for how long it takes for the shock to wear off a little, I say a little because even now four years later I still cannot believe that my husband has ALS; but it will subside a bit, and you will start to see that you have a tribe of people who are your warriors. These people will be some of the people who started this journey with you and many more will join the fight. They will be motivated and work hard, they will want to be hands on, they will want to do fund raisers and help with whatever they can. It will feel so weird. You will feel like you cannot accept the help, the offers to raise money for accessible bathroom remodels, and wheelchair ramps, handicap vans, house hold maintenance, help at work, help with your kids, raising awareness, and so much more. You will feel over whelmed and humbled. Accept the help, you need it, and you will continue to need it. Do not isolate yourselves, no matter how private you may be, let people in. And people, don't ever stop asking to help, even if you get no's at first, the fact that you keep asking is showing support and that act of asking alone is help.
When a family gets diagnosed with ALS (and I say a family because every single family member is affected by this disease the worst of which is the person who is affected physically) there is heavy grief, followed by panic. The grief if for the loss of the life that you knew and it continues for the person diagnosed with the loss of their job, their identity as they knew it, their physical capabilities and so much more. ALS has its own time line and that is different for everyone. For some it is short and for some much longer but the grief is present for everyone. The panic comes in the form of how will we survive!? What will I do if I can't work, what will happen to my family, how and who will take care of me. Here I will insert CLINIC. I know some people hate ALS clinic, but I feel strongly that clinic is what you make of it. You will be in no mood to deal with clinicians at times, they are not the ones with this disease. It may seem pointless to monitor progression, you may not want to get bad news every few months. Understandable. However, most of these people are in this field because they have compassion and want to help. I don't know many doctors, nurses or therapists who want to work with a disease where they lose just about all of their patients. Unless, of course they have empathy and compassion and genuinely want to help you. Clinic is work. Like everything else in this life you need to try, put yourself out there, communicate, state your feelings, advocate for your loved one. Relationships don't always click with the first meeting, but if you give it some time I think most clinics will be there for you. Johns Hopkins has one of the best ALS clinics. I am sure there are many other wonderful clinics out there. Give yourself time and don't give up. You will need clinic along the way for so many things. It's a wonderful thing to have medical professionals who understand ALS working with you.
Get a good family doctor and develop a relationship with them and their nurse. You may need someone who is close by to help you manage your care along the way. Find someone who is willing to listen and work with your clinic. We have an amazing family physician and his nurse as well. He listens and was only ever a phone call away. He was not an expert in ALS but he was always willing to research, and work with others to do what was best for Bert.
Sorry for all that intro, and yes sorry that was just the intro to what I have to say. I am not a professional writer, I know blogs are supposed to be short and sweet but if your reading you are probably one of the people I am talking about here, or you are just beginning this journey, and if you are believe me this is worth the read. OK, here goes. My heart is bursting most days with how grateful I feel. Bert's too! First let me be clear, ALS SUCKS! In my humble opinion it is one of the worst diseases out there. I never even really know how to explain what it is like to watch a person who you love lose all of their physical abilities and literally not be able to move a single muscle. I have not accepted it and probably never will. I spend a lot of time thinking about Bert when he ran, and biked and I miss so much the simple things like watching him walk around the house in the morning on an Office Depot conference call on mute shaving. I miss seeing him in his suit and tie, he is super good looking and I liked seeing him in a suit after he came home from work and kissed me. I miss him holding my hand and standing so much taller than me that I had to stand on my tip toes to reach him. I miss his voice so much. I miss his terrible out of tune singing in the car. I miss him driving. I miss his cooking. I him tickling Sophia and Alex and coaching soccer and swimming and hiking and so many, many things. I hate this disease with all of my being but I cannot let him down by allowing it to bring me down. So, we use the energy from all our PEOPLE to stay focused on what it is important and what is most important to me about Bert is his heart, his love, his personality; ALS cannot take any of those things. So why am I always feeling grateful and positive. Well, because we have a tribe of people near and far who have our backs.
So, for all the things ALS takes there is a person in our tribe that helps bring that thing back. Bert ran, we have athletes who run races, climb mountains and recruit others to run and strive to be the best they can be while honoring Bert and raising awareness for ALS. We can take part in their adventures, and see their We Believe t-shirts, we can feel their energy and support. We have been able to be there to witness some of the adventures and take part as cheer leaders. We love these athletes who run and bike and hike and move for Bert when he cannot. Our hearts are bursting!
We have family to fill in the gaps and help us parent. It is hard to raise two teenagers in a perfect world, even harder in our world. We have help driving kids to sports, and play practice, and school activities and friends houses. Our families help with household tasks like laundry and lawn mowing and cooking and cleaning. And everything it takes to make a household function. Our families provide support and sometimes take the brunt of our moods even when they seem not so grateful. We don't always need to even exchange words with our family, they seem to know just what to do. We are blessed.
Our children have friends who love and support them. Their friend's parents welcome them into their home and show them love and support. Our children have guidance counselors and teachers and coaches who understand what is happening and show support and love and probably cut them breaks sometimes when they may be out of sorts. This support system is so important! These are the people who keep things "normal" for our kids. We are grateful!
Bert has friends who see past ALS, they talk about soccer and UFC fights, they visit and are there for him helping with all the things he loves and can still do. Bert goes to every one of Alex's soccer and basketball games, I never need to worry about the logistics because I always have a friend (you know who you are) waiting to unload the car, set up an umbrella, help Bert, and hand me a coffee <3. We have a friend who picks up Alex early and makes sure he makes it to the game on time. We have old and new friends and total strangers always ready to pitch in and make those things work. When we go to a concert or play, we are helped to the seating area, teachers and directors think ahead about what might make things easier. These acts of kindness are HUGE when living with ALS! We appreciate these PEOPLE so very much.
We have financial help. I repeat we have financial help. People have fund raised and donated so that we may have a first floor handicap bathroom, wheelchair ramps, the Tobii eye gaze computer, funds so that our kids are able to participate in sports and theatre. We have had help with donations of equipment, mostly from other people who have been on this same journey. We have had help so that we can celebrate holidays, fix our house and cars when they needed repairs. PEOPLE have helped us tremendously with the great financial burden ALS puts on a family. When I think of all the help we have been given I feel overwhelmed. I wish I could thank each and every person in person.
We have PEOPLE who pray for us. That's huge whether you are religious or not, everyone can use prayer when dealing with ALS. God has graced us with a whole lot of prayer warriors. And we feel it. I 100% believe that God is listening to all of your prayers. We have made it through some rough times and have been blessed with so many good times. Prayer is powerful, having PEOPLE to HOPE with you is powerful. It is a feeling of being safe and knowing that God is in control.
We have LOVE. This may just be the most important element of living with ALS. It of course ties into all of the above. LOVE cannot be touched by any disease. You don't need to be able to move or talk or eat or even breathe very well to LOVE. I recently went back to work a couple days a week. This was scary for me as I was so anxious to leave Bert, he was nervous too. My sister takes care of him when I am at work. With the help of our mom's and dad's and our certified nursing assistant Bert is cared for with love and compassion while I work. I feel happy when I get home and Bert is happy and comfortable. Everyone has given up their time to LOVE us. Tears are coming now as I type. We have had a couple of hard days this week, Bert has a cough and it has been wearing to say the least. Monday evening it was just too much and he was so upset, feeling like ALS was just getting the better of him and feeling like the whole thing just wasn't fair to anyone. I felt helpless as there is so little I can do to make that feeling go away. I comforted and did my best and then reached out to our PEOPLE. The next day was so much better, even though I was at work, our PEOPLE cared for Bert and helped make him feel LOVED. They picked up kids and helped with laundry and LOVED. I was so happy to arrive home on Halloween night to him feeling good, comfortable and happy. He was thrilled to tell me how he introduced my little nieces and nephews to the Annoying Orange (google that craziness if you don't know what I am talking about), he smelled of essential oils that my sister had massaged his hands and feet with; by the way, he calls us witches for using oils. But, LOVE heals and makes living with ALS bearable.
So, what's with this long rambling blog!? Well, you need PEOPLE! No matter what challenge you are facing in this journey we call life, let PEOPLE in, let them help you, let them support you, let them pray for you, let them LOVE you. And do all of the above in return. There is so much negativity in this world, so much heart ache, and hatred, you need good PEOPLE to help you live the best life you can. We are lucky enough to have so many special people in our lives and we could not be more GRATEFUL! We love you all!