The support groups play very key role when someone becomes sick and that illness becomes chronic and looking for someone to understand your pain and struggle ; here comes the support group where you meet people with common disease. If you find someone who is also going through same kind of situation just like you are then you can share all the feelings, how much it hurts, how hard it is to deal with a disease, how chronic condition changes the whole life etc. I was looking to hold on to something desperately even though I had tremendous support from the wonderful friends and family. But I always felt like maybe I’m the only one who was going through such hard time, feel sorry for me or feel guilty for getting sick and give such hard time for the family and friends.
When I was looking for some group where a group of people try to support and comfort each other as they understand every single thing what I go through, all the symptoms, the excruciating pain for which I gave the name of the “beast” because it made my life miserable. Then I found that kind of group online which connected me with so many people who are going through the same kind of situation and for the first time since I got sick made me feel that I’m not the only one who was going through such hard time but there are many people who have this problem, struggling but trying to hang on and at the same time help other people who are in the same condition as they are. This gave me hope to hold on to something and made me that if they can do it I can do it too. To tell you the truth with the finding of this group I’ve found new life.
Very soon all of us became good friends and supported, comforted who ever needed help if they are in pain, feeling down because of pain, bad nausea, throwing up, even after taking break through medicine the pain’s not coming under control etc. We shared our feelings, our pain, and our families, sometimes the boyfriends left their girl friends if they got sick and they cannot have fun anymore with them. Those always made me so angry and made me realize how lucky we all are whose boyfriends and husbands or wives are supportive, loved unconditionally; try to be there all the time for us. We shared tips for not to get nervous during the tests or procedures, pray that the results of the tests should be normal, if not we all used to give them moral support and tell them that we have been there and if we can do it they can also do it. Made some good friends and helping all the friends who are in need of help made me get rid of feeling sorry for myself and realize that I’m not the only one who is going through hard time with the “beast.”
We were doing fine but some friends left and I was trying to keep myself busy doing different kinds of things I like at home so that I get diversion and also help the family financially little bit. So, once I started getting busy I slowly stopped visiting the online group that much. Some friends who did not give up friendships were still in touch using our own email Ids than going through the support group. Joe and I became friends through online support group.
Joe and I called each other or send emails whenever we needed moral support and we did support each other and comfort each other. He was in lot of pain, was in the hospitals and getting frustrated because he went everywhere to see all the specialist surgeons and nobody was ready to touch the problem which was driving him crazy. Then finally he got hold of the famous and specialist doctor at Mayo clinic and told his situation on the phone for an hour or half an hour. He asked Joe to come with his wife to talk further and do some procedures and tests to decide what kind of surgery is necessary. He was so excited and called me and said he was positive that this surgeon’s going to come up with something that will take care of his problem. I wished him luck and when he came back he called and told every single detail that doctor has said and what he felt at peace after a long time. Joe said, ‘if the surgery becomes success and I’ll get back to my normal life that’s fine but if that’s not possible and if he can takes the pain away I’ll be more than grateful.’ I was happy to see him see so excited and I never discourage people who are going through the surgeries or procedures which worked for some patients and didn’t work for some patients. I told him everybody’s bodies are different and do not listen to the negative comments people are going to say to you but listen to all the positive comments and start thinking positive.
Joe was a good listener and a good human being. He was gentle, kind and compassionate. Joe and I shared all about our families, what’s happening with our kids, how wonderful our life partners were who support us so much, this was a diversion from our talks of illness. Joe was scared about the surgery and didn’t want to bother the family members making them worry about his surgery and about him. So whenever he expressed his fear to go through such a major surgery I listened to him, try to calm him down and talk about all the positive things that he was going to have after the surgery and ask him to concentrate to take care of all the small things around the house that he can do but not do too much and get tired.
So our friendship grew and we both became best friends before, during and after the surgery. When he went to surgery I kept praying and hoping whole heartedly that his surgery should become a big success, he’ll never have that excruciating pain and I want the “beast” to get away from his life. The usual recovery time in the hospital is from 3 to 4 weeks but once he didn’t feel the pain that bothered him all the time Joe’s spirits were up and his recovery was so fast that he discharged within a week. When I called the hospital hoping he is still there but he answered from the hotel where they were spending the night and going home next day. I was very surprised and he said everyone has the same reaction and he excitedly said that in the hospital everybody was calling him ‘a wonder boy,’ because they haven’t seen anyone recover that fast from such a major surgery.
After that I never heard that suffering voice which he had before surgery instead he started sounding excited all the time and I was so happy for him. Just like he wanted and everyone wanted he got rid of that “beast” from his life and everything from now was going to be wonderful for him. Sometimes it was hard to see him as excited as it made me nervous because he doesn’t feel the pain he’ll work more and then he can get sick again. Of course I was happy for him but I was reminding him all the time to be careful, not to forget that he had a major surgery not long back he hasn’t totally recovered so he needs to take it easy.
Joe used to say I am taking care of myself because I don’t want to go back to the same condition. He started telling me all the normal things he was able to do and how good he feels to work again, to earn some money and pay the bills. His wife used to take care of all those things. He used to say that his wife is his rock. Now he can travel to his parents’ house and fixed some of the things that needed to be done and that made him so happy. He sent me mail saying he never thought that he was ever going to do all these normal things and it feels good to do them. He ordered handmade jewelry for his wife and daughter and it’s the first time after a long time he was buying them the gifts and I can understand what a wonderful feeling was that. I stopped calling him after Christmas like before because he was getting busy and I didn’t want to bother him. Sometimes I used to send email and whenever he used to get a chance he used to answer. For the past two months I have been suffering with lot of pain and naturally I shared with him how much it is bothering me. He wrote to me saying that he wishes that he can take that pain away from me and make him totally better.
We were sending emails now talking more about the kids and what they are doing, how we feel about them etc. He told me one day that his wife and daughter went for the Prom dress shopping and he is home alone. He saw her daughter go to the Prom and he felt so proud of her. She is a good student and sometimes these things used to make him emotional because he never thought he’ll be here to enjoy these moments and sometimes it became hard for him to believe that these things are happening in reality. Just few weeks back I got mail from him saying he is doing great and enjoying his life, his daughter was sick and he is going to take her to the doctor. He used to tell me everything because he wasn’t doing all these things for a long time. I always used to reply and at the end remind him that it was not even one year since his surgery so he should not forget about that and not work too much and take it easy. Joe thanked me so many times for being there for him when he was going through rough time I said, that’s what friends do and he also helps me whenever I need.
I was checking mails on May 3rd and there was an email from his wife saying read it right away. I opened it and it said I regret to let you know that my lovely husband has passed away. I didn’t understand what it meant for a while and my mind was blocked, I woke my husband, asked him to read the mail and he did it. What does it mean I said and before he answered I was asking myself does that mean Joe passed away? It hit me so suddenly and I started saying no it can’t be because he said in his recent email that he is doing well and he is enjoying his life. How can this happen? I have to call and find out and took the phone. My husband tried to stop me saying its middle of the night and they are not going to answer and I don’t think they’ll call you back immediately right now. But I dialed the number by that time and it ringed for a while and I heard Joe’s voice in the voice mail to leave the message and I started talking to Joe saying, ‘what am I hearing Joe? The email says you passed away but I don’t believe it. You wrote that you are doing well and you are enjoying your life what happened Joe?’ My husband was trying to remind me that I’m supposed to leave the message for his wife and not to Joe. When I looked at him then I switched my message to his wife and daughter. It was such a hard night for me. I couldn’t sleep and was trying to think what might have happened. I cried the whole night.
It’s always hard to lose good friends. I lost a friend who died of cancer and we used to communicate with letters and exchange photographs of my little baby that time. Even though we know that chemo stopped working and she was going to leave one day nobody was ready to accept it when it happened. Joe and I never met but we have developed such wonderful friendship and it was so painful and hurts to think that I’m never going to hear from him or get an email from him or hear his giggle when he was so happy and recently he was so excited that I heard in his voice. We did share our family pictures and the stories of our kids and all the happy moments in life with them. Whenever I talked to him or got email from him he always asked about my kids, my nephew stayed with us for a while when he was looking for a job and wanted to know whether he got the job or not. When I told my son adjusted to New York City life and he is doing so good in the studies at NYU Joe was very happy. When I felt lonely and missed my son he listened to me and was very gentle and used to say it will take time to get used to it.
I’m not prepared for this and he told me once that he wanted to have wonderful time with his family and when they retire he wants to sit on the porch with his wife enjoying peaceful evenings. When Joe’s wife returned my phone call she was in total shock and said everything happened so quickly, he had a fever and when the temperature was high they took him to the hospital and they did all the tests. They didn’t find anything and they asked Joe whether he wants to stay or go home? They said he can go home and take Motrin or Tylenol every few hours. He was dehydrated, he had high fever and very restless. I don’t understand how can they give him choice instead of keeping him in the hospital and try to treat dehydration and bring down the fever? I don’t know what to say, I am so sad because he fought with the serious illness and got better and died of some simple viral fever. It doesn’t matter now he is not going to come back and I still cannot believe he is gone just like that!
We don’t live close and I couldn’t go to funeral and I didn’t want to see him like that. If we ever met we always wanted to see each other healthy and very happy with our lives. It is such a painful experience to lose you. I can understand what his family is going through. His old parents who were having good time with him and he suddenly left. I cannot imagine how hard it is to lose loving life partner and I pray that his wife gets strength to deal with this. If I miss him so much how much his family is going to miss him and how much they suffer with his demise? It is hard to explain or imagine. I didn’t get a chance to say goodbye and how can you say goodbye to someone who was doing so well. Goodbye my dear friend! I’m going to miss you so much.