My friend, Ann, called me about a week and a half ago and said she and her husband would like to meet us for dinner in a couple of months. How awesome! She said they discussed it and wanted to wait until the visiting and calls started slowing down for me. Sadly, they know the in’s and out’s of grief and loss, because their 17 year old son passed away 5 years ago in February. They are now grief counselors and know this is what is “normal.”
However, as I told her, she was the second call I got and I hadn’t had even ONE visitor since the day I found out my brother passed away. Now it is going on 6 weeks and I can still say the same thing.
My friend, Barb, who came over the day he passed was planning on coming, but she got sick. So, I am sure I will see her soon. Thank you, sweetie!!
But really? Did this really happen? Did I really go through 6 weeks of utter despair without people around me?
I am not hinting for people to call me now. Frankly, I don’t even want to talk on the phone. Yet, it is strange that people weren’t even trying to call and at least talk to Wayne.
People don’t have to come up with the right words to make someone feel better. In fact, it is better to pass on the platitudes and just love someone and be there for them. Laugh with them and cry with them. “Rejoice with those who rejoice; mourn with those who mourn” Romans 12:15. Have dinner together, watch a movie or play a game. These are the kinds of relationships I yearn to have with friends and family, not just in this time of need, but people I can share my life with for a very long time.
I realize that I not only have 24×7 horrific pain and limitations which keep me from being able to get out and about very much, but I also have the chemical sensitivities which also keeps others from being able to visit me. Nonetheless, I have written until I am blue that as long as someone uses fragrance free laundry detergent, I can provide shampoo, soap and deodorant for them to use before we meet if those are an issue. I have offered my medical scrubs and even my shower. There are usually ways around it. Still, I often go months without spending time with people.
These Scriptures keep running through my head, “The King will reply, ‘Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me.’ Matthew 25:39-41 “He will reply, ‘Truly I tell you, whatever you did not do for one of the least of these, you did not do for me.’ Matthew 25:44-46
What is really nuts is that with all I have been through in the past 20 years, I have kept my “self-esteem” together pretty well. After all, I am a giving, caring, loving, funny, pretty smart, talented person (tee hee). But now I find myself wondering why I am not worth the trouble. I see people on Facebook talking about having dinner, visits, etc with other people, but they tell me they are too busy.
With being isolated for 20 years and the past 6 years being so extreme, I have asked myself if people would miss me if I were gone. Now, I am not talking about people being sad, because I am sure they would be lots of friends and family who would be sorry to hear I was gone. However, I am talking about people actually missing me in their lives, on their path to church, work, social settings or at home, because I never or rarely see them if I do see them at all.
On the other hand, I am missing my brother everywhere! There is a hole on the big, puffy green chair he loved, a hole on my driveway where his Trans Am rolled in, a hole on my couch where we ate the Texas Roadhouse dinner he drove 300 miles to bring me and a hole in my doorway where he would say, “Hey kiddo! I’m here! Give me a big hug!”
He was always there for me when my friends scattered. I hate that hole! It is everywhere! I just want to wake up from this nightmare and leap into his arms.
ADDITIONAL RELATED STORIES
Remembering the Best Brother a Girl Could Have
The First Month Without My Brother
Milly POTS says
Hey Sherri, I am so sorry you are feeling so sad and alone. I’m sending you as much love as I can and praying for company and support that would be soothing to your heart.
Thank you so much, sweetie!! I am so very grateful for my internet friends, especially amazing, caring people like you!! But I, like any other human, need touch, laughter and life-sharing time. This is nuts! LUVU!
Believe me when I say Sherri, and I’ve never had to live in isolation for extended time because of health issues, that all grief is lonely, there is no social normal for those who have experienced a loss, and you’d be surprised the sense of “silence” many people experience socially while grieving. Pick up the phone and call those closest to you. Don’t wait for a call or a visitor. Call those you are praying for and let them know…and that will create the intimacy you crave. The sense of feeling unlovable and unnoticed and isolated is not simply circumstantial, it’s classic, text book grief. I highly recommend this for those who haven’t read it: http://connect.legacy.com/inspire/page/show?id=1984035%3APage%3A9234
Thank you, Barb! I will definitely read that! I am sure I am experiencing what others go through after a loss. I am sure many people don’t know what to say. I understand that.
However, my blog wasn’t really about just this past 6 weeks. It was about the isolation I live all the time. I do talk on the phone to people, but that is not the same. Until recently I used to reach out to people by phone, email and Facebook all the time and ask people to get together. Frankly, about last Fall, I got tired of feeling like I was trying to twist peoples’ arms.
Anyhow, I have no interest in having a phone only relationship. The phone to me is like being hit with baseball bats and dragged. The pain is excruciating for days. I will gladly talk on the phone with light or short conversations, but that is not how it usually goes. Phone conversations usually require a lot of enunciation, word recall, quick answers, etc. People get frustrated with me on the phone.
In person, Wayne can do some of the talking and I am not limited to my voice to get an expression across. There is touch, body language and facial expressions that make it much easier to communicate and love.
The relationships I desire are those in which my friends are in contact with me by phone and in person (doesn’t have to be that often). People I can share dinner with, a movie, a game and lots of laughs. People to share life with and have fun with, doing things that gets my mind off my circumstances, not sitting on the phone talking about them.
Hope this makes sense. LUVU!
Teri Sluder says
Hey sweetness. I know EXACTLY what you are going through. When my mother passed away, I had exactly ONE visitor, and that was my cousin who brought over a food platter. That was awesome of her, but I have family all over this place, not immediate family, but family nonetheless. I had a few friends show up at her funeral, but NONE of them called me to see how I was doing or even just to talk.
I know that my illness is one of mystery, and SO many people do NOT understand it, so rather than trying to (I sent links out to them) they have chosen to ignore it…and me. After this many years, I’m okay with that, but it doesn’t make it any easier. I still keep you and your family in my heart, thoughts, and prayers.
Lots of love,
Awww sweetie! I knew your mom had passed, but did not know how alone you were in your grief. It is hard enough to go through these things, let alone without family and friends. LUV2U!!
Kathy Fawley Frankforter says
Sherri: If I lived closer to you, I can guarantee I would be there. I would do whatever I had to do in order to see you. I do feel bad and can kick myself in the fanny for not getting a card to you. I could have sent it to IDA. I don’t have your home address. I worried a lot about you after your brother passed away.
I have to say in all honesty, I get caught up in my own drama which as you know via IDA, is quite often with regards to my daughter etc. It’s not that I forget my friends – I am trying to take care of myself due to stress and all the junk around me.
Back to you – I don’t know what the answer is but I can tell you that even my friends have stopped coming to see me.. Perhaps it’s because I am a drag on them? I just found out recently that my family per my bratty nice were all tired about hearing about my medical issues. I rarely talk to them about it. I am very confused on that one.
I just do not want you to feel so alone and know that I would do whatever I had to do in order to visit with you. As it is, I stopped wearing perfume years ago. I wear unscented deodorant but I do wash my clothes in TIDE. My hair shampoo has a scent.
Boy, if I had you over at my house, what would I do with all my candle supplies? lol I could store them outside – would that help any? Hop on a plane and come out to California. My husband has relatives in Colorado so who knows, we may be coming out there in the future. We would drive but hopefully I can handle a long drive like that.
You and Wayne are my heroes. I am dead serious about that. I tout IDA any chance I get. I spread the word. When your brother passed away, I was in disbelief. My heart hurts for you a lot and for Matt. I worry about the people in IDA who are worse off than me.
I dearly think the world of you Sherri and whatever I can do from here, I will do. I am sorry I am so far away. I still can clean my home even though it takes me a few days to do so but I still do it. I could help you out in that dept…so it is frustrating to me that I am here and can’t help out in some way. You are always in my prayers. Both you and Wayne.
Kathy Frankforter in California
Hi Kathy! You are sooooooooo sweet! Thank you so much for your love and prayers! PLEASE do not think twice about the card. I do not need a card. I got many wonderful messages on Facebook from my internet friends. The support was amazing!!
My blog is really about being isolated all of the time from people near by, not just these past 6 weeks.
We don’t have to worry about what if I lived there, cuz I don’t. However, if you ever found yourself in our neck of the woods Wayne and I would be unbelievably thrilled to meet you both!!!!
Unfortunately, I cannot be anywhere near fragranced laundry products. The petroleum and chemicals attack the nervous and immune systems, get on the skin and are absorbed through the skin, as well as go right into the brain and eyes. Their emissions go 30+ feet away from their source. They are not good for anyone.
We have tried every which way to get around this issue. Sadly, they are virtually impossible to get out. Takes months if not years IF it comes out. We have even tried putting people in my scrubs, but when they put them on it is already on their skin and I still can’t be around them without getting deathly sick. Also it transfers from their skin to my scrubs, in which won’t come out. We have tried and have had to throw our clothes away.
Anyhow, I urge you to change to a healthier product for yourself and your family.
You are an amazing person and I am so blessed to call you my friend! Thank you for your amazing excitement and support for IDA. Keep them in your prayers as they continue to move forward with many incredible projects awaiting funding and staff.
LUV2U my dear!!!!!
Susie aka Cherry56 says
I posted a comment, and when clicking ‘post comment’ it didn’t show up anywhere. Is it lost? Or will I need to write the whole thing all over again? I’m so sad and need to ‘tell about it’ but things just never work out for me to do it. 🙁
Hi Susie! This is the only comment posted. 🙁
Susie aka Cherry56 says
Sherri Honey, TY for letting me know that.
I wanted to let you know I’m so sorry you’ve been going through this. Loneliness in one of the most painful feelings anyone can go through. I’m sorry I hadn’t been there for you as much as I should have. When you lost your Brother I had lost my Mom. I must admit that I avoided the subject out of pain and also because I knew you needed the support. And if I jumped in, it would take away your time of need. Being it was during the holidays, others were experiencing mourning also. I opted to keep somewhat quiet. (which so I’ve been told is close to impossible for me to be).
I have mental issues that I believe has caused pretty much every one I love to pull away from me. Thank God for Jess. He’s so dedicated to being here for me. I feel like even most of my family have ‘gotten too busy’ I find good friends, but after a time, they disappear. Or pull away to a point. My heart has been broken too many times. I no longer leave my house without a very stern push by my hubby for fear I might make new friends that I’ll soon lose anyway. I promise this is not a ‘pity party’ post, but it’s been weighing extremely heavy on me. And when I read your blog it showed me I’m not the only one who has gone from a very social person to a very lonely one. I’m told I’m loved,,, but then it seems to be at a distance.
I can be very chatty. My whole family are like that. I know I need to be a better listener. And I know I need to stop smothering people with my boring “info-talk”. The phone has been my only social life for a few years, but lately it doesn’t ring as often. (except for telemarketers or politicians) And being home alone during long days can be just terrible.
Needless to say, your blogging is extremely helpful not only for yourself. But for others who deal with issues we feel so alone with.
Sherri, you are amazing! And I Thank You HUGS, Susie
Wow! I hear you, sweetie!! I know it is a constant struggle when we are sick to keep relationships going. Have you ever talked to Jane about the Meetup group she started? It now has over 170 members. They meet for coffee, dinner and all kinds of fun things. I tried going several times, but got deathly sick from the fragrances. They now have a fragrance free policy, but I still got sick from the soaps and laundry detergents. I was SO depressed! Without severe MCS, this is a great way for people to enjoy friends who understand. LUV and HUGS!
Angela Pierce says
I read all the comments you have received so far. Sadly, it does not appear that anyone close by your neck of the woods answered your blog. It is so hard to feel ignored or like you do not exist in this big wide world.
Dealing with illness from the time I was nine it was my family that first rejected my problems. I had epilepsy and if I got too excited I would have sudden attacks. It made me self-repress my feelings from a very young age. The seizures happened alot on holidays at school at track or swim meets even the mall. I was self-conscious and most people thought I was kind of wierd or strange.
So you can probably guess after my first seminster of college at 18 years and falling 125 ft. off a cliff there was not the support that I needed. Everyone just wanted me to move on. They thought any fear anger frustration was self-absorbtion. 12 years later I found out along with constant pain and illness I had PTSD.
Yesterday I was talking with my “best” friend from college, I told her about a friend dying this week and how agonizing it was when the nurse asked her “Do you have the quality of life you want?” As she answered no so did I…It was a weak moment for me. Instead of saying wow that must have been hard. She said, “You have had a really strange week. You should be happy she is not suffering. Of course I felt that but, I just lost a friend I have had for five years. It is strange sometimes I think people get more choked up when an animal dies or suffers than a human being.
Sherri it is so hard to not have anyone close by who won’t give you unconditional love. I don’t care if people around you think…it’s all in your head…it up to you to get them to understand…. Keep reaching out… and…the big one Try to see it our way.
You deserve company from family and friends Shame on those who live close by and do not try reach out. You are constantly trying to explain your sickness, the emotions you are facing grieving over losing your brother, school friend and it must be incredible difficult knowing your mom is sick so you both are greiving without warm hugs and kisses. You are so gracious to everyone. People need to stop making excuses and take the time to lift you from your pain and suffering. because You are a Human Being. Maybe we would be kinder and try to be there for others if we were covered with fur.;-)
We will see you in the Fall
Wayne is amazing and it seems like he is a wonderful partner but he is also away a lot.
Angela, I didn’t realize you went through that as a child! Wow!
My best friend passed away in June of 2007. Yes, I was happy for her that she was finally out of her horrific pain, no doubt! But I was mourning her loss. When someone loses a loved one, they are often faced with platitudes, instead of just comforting arms and compassion for what the person left behind is feeling. Those feelings have to be worked through.
I am so sorry you lost your dear friend and will keep you in my prayers. I know how devastating it was for me to lose Jenni. I was so distraught, because she was the only one who really understood, had us over on Holidays and was happy to go fragrance free so we could spend time together. Sadly I didn’t get to her house that many times, because I struggle with getting out and about. But, I knew she was there and had just made a plan to see her more often.
Thank you so much for your love, compassion and friendship! I wish I had a beam machine. I’d beam myself out your way and we would go sit on the beach. That would be SO wonderful!
I was one of the first people to reply and I live about 30 min from Sherri, about 25 min from our church. I try as hard as I can to have an ongoing relationship with Sherri.
And I know that I know that I know that she is unconditionally loved and dearly prayed for by many people nearby who, for a variety of reasons, not something as simple as selfish addiction to perfumes or whatever, are unable to spend time with Sherri.
It is hard to be so broken-hearted and compassionately prayerful and worried about Sherri but unable to do more because of life obligations (work, family, health, etc), personal illness (I’ve been really sick for 3 weeks), contact with people who wear fragrances (I am FF but work with others who aren’t) and to just be worried about having a fume or a germ because I’ve become so paranoid about what might cause Sherri a serious reaction.
The most compassionate people know are those who would LOVE to do more, but are MOST worried about causing a catastrophic, devastating, days or weeks long, horrific, painful episode because of contact that brought Sherri in contact with something she can’t handle whether that is a long, draining phone call, a food item, fragrance, or chemical without a fragrance but causes a reaction. Most people just don’t have the expertise to deal with the nuance of all this. I would say that a compassionate heart is just as worried about causing Sherri pain as trying to make contact. Those who love best struggle with trying to avoid causing pain. I know that’s a difficulty I have. I sometimes just don’t know what to do, and Sherri and I have talked about this. I try to talk to others about it, too.
Believe me when I say I try and ache and pray with grief for Sherri. She is on many hearts and minds even if she is not in the social schedule. I pray for the 3-4 significant relationships Sherri needs like most people have because I know when it comes to intimate, loving friendships, most people only have 2-4 people they’d call the best of friends. Jesus Christ himself on earth only had 3 friends in his most intimate circle. As I’ve grown older and wiser, I know I only long for those precious 3-4 in my immediate circle, and that includes rare social outings or gatherings. Just those who I can call on or email when I’m most in need.
If I don’t love Sherri (or anyone) unconditionally, then I beg the Holy Spirit through Jesus Christ and the power of the Cross to continue to work in me for agape love that points to Christ and the amazing free gift of salvation, grace that fills our lives to overflowing, and joyful service that brings hope and healing, warmth and love, not excruciating pain and horrific torture. I pray for opportunities, health, time, motivation and the grace of God to serve Sherri and be available. I pray that the little some can give is meaningful and fulfilling.
God is so good, and he is truly enough. I pray his provision is satisfying in whatever form it comes even in the midst of extraordinary pain and loss. I will continue to pray and do what I can according to the priorities God has given me to obey and fulfill, and the struggles I also weather everyday as well.
Hugs and love in Christ Jesus to Sherri and all those who suffer what seems unjust loss and pain,
Thank you again for being there for my mom and me the day we found out my brother passed away. You can’t even begin to imagine how grateful we are for being by my side on the worst day of our lives. As I wrote in the blog, I know you had planned to visit me again, but got so darn sick. I look forward to seeing you when you are better and have had a chance to get things back on track with having been out of commission.
Your friendship is so dear and precious to me! You have truly stuck with me in the hard times and have made incredible efforts and changes to stay a part of my life. You are a treasure to me!! I love you!
Thank you for writing from the perspective of friends and others who do love and care for me, but are afraid to harm me. I do understand that side of it and am sensitive to that. As I attempted to express in this post, it has mostly come down to the laundry products being something that cannot be overcome (can’t be washed out, stick to skin and hair, etc). However, if that is not an issue, if people use fragrance free laundry products, 99% of the time, there are alternatives and solutions.
I believe just the thought of all the things that need to be considered, what to change, how to change, what to get, where to go and the what if’s cause people to be understandably overwhelmed! If it were me, I would be too!
Thankfully, many years ago, we created some options, tools and precise step by steps which take the unknowns and most the risks away. If someone wants to meet for dinner or visit, with just a couple of questions, I can determine if it is possible. If it is, I provide information on going totally fragrance free (a list of products and where to buy), replacing a few products, omitting a few products for the day (like hairspray, lotion) and/or how to make a fragrance free kit that can be used several days before a visit.
In fact, we have often provided the fragrance free kits to people who have come from out of town or who want to have an ongoing relationship, but are not totally fragrance free (nor use fragranced detergents of course).
Thank you again for your perspective! We want to be cognoscente of the challenges of caregivers, friends and family as well!
I have not experienced loss of a human that was close to me (but the loss of my first 2 dogs was devastating). I am sorry that there hasn’t been the support there that you need, as well as for Susie.
But the isolation? The loneliness? The loss of friends, family, support? Yes, I have experienced those things since my accident in 2005. The chronic pain and anxiety is overwhelming. The depression is crushing. I have had several episodes of suicidal ideation. I have been hopeless. I have felt helpless. I am barely eeking by financially and emotionally. Still I struggle to survive. I’m creative in that struggle but it gets old and I often want to give up. Most people don’t understand how that struggle is a changing experience, day-to-day, good days, bad days, days that are neither, just numb. What keeps me going? It’s not friends, it’s not family; it’s mostly my dogs. if it weren’t for them, I would have long since acted on my suicidality. And one other thing: the big and little blessings that I have been grateful to receive. The things that remind me of the good in people. I do question, “why me? why do I deserve this help?” and then I remind myself to just be grateful and, when i can, pay it forward.
I am so sorry you are suffering so much, too, Rachelle! I know every day, every moment is a thought just to get from one room to another over here, so I know the survival. We have to take one step at a time and as you said, focus on helping others. Dogs can certainly be more loving than people, that is for sure! I am so glad you have the Meetup group for when you are in the mood for humans (LOL). I am so devastated that I got so sick when I tried going. Thank you for reaching out to me and to others in the midst of your own pain. You are a remarkable person!
Cathy Turner, Disabled Manager from the Woman's Hosp of Texas says
Dear Sherri (and Wayne): You have been my fans and my side line cheerers for 13 years. You even have Invisible Fans!:) My sister bought the booklet “But You Look So Good” and gave it to me, my other sister and one for her. How nice! A few years later, I can’t find my family, but I have the booklet, all worn from reading to keep validated! My sick limit is up. Some say I’m milking it. Some say I just want attention. You have heard them all, too. The ones that come and help, are the ones that live across the nation. The lady that came once a week who was an acquaintance before she got a good look at me, drove 3 hours RT every week. Until I fired her! ha. I told her I was better, etc… and convinced her to slow it down. Why did she drive that far when I had plenty of friends a mile or five? At deaths door a few times, and …. NOTHING?!?! Grief. My parents would roll over in their grave. To let them go a few years ago, then our family split. We were close, but TBI, CFS, FM, CRPS, other virus’, dystonia, (which these cause cognitive issues) I guess made me say something that upset them. Why not sit down and talk? I’ve asked what is wrong…. “nothing”. Because of the virus’, I have a wonderful doctor who is known for helping those with CFS and other issues that can’t be cured. Would a doctor refer anyone to her? No. Only as a last resort. I’m moving up the scale, in baby steps. At the last conference she attended, she took notes for her patients. She found out as these virus’ begin to go away, that Lyme can be hiding and pop up and take over. Groan! I have one bar of Lyme…. so she watches me carefully. This week is a week of “sleeping beauty”. Somehow, I get food down, and I’m asleep. I sit at the computer and am bent at the waste almost completely sideways. My husband did get one while I was trying to eat, but it is more mild. It’s hit when we happen to go out to eat. I laugh inside at what we must look like….I’m falling asleep, he’s trying to keep me awake, feeding me, and I’m talking out of my head, because I’m dreaming. Then drags me to the car. Holding his head up and not embarrassed at all. It’s just too funny…. but, I’d much rather do something else funny, since it’s not called funny in other’s eyes. You have been an inspiration to me, and I’m glad I found you personal site. I have tried and tried to make one…. but I don’t know how. I’m determined, and get discouraged, and cry like a baby, then start over again. So, I”m trying again…. slowly but surely! TBI seems to make me talk longer since I’m not sure I’m getting it out. Working on that one! Thanks again, and love your little 4 legged child! I have a service dog for seizures. She’s small, and she is the best caregiver, also. All for now, should pick up a few things off the floor…. I might get company that hasn’t had time to come in a few years!~ 🙂
Cathy Turner, via +gmail (chatcat57)
and Linked In with Wayne C.
Jesse Benjamin says