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“It’s a black hole.”

That’s how one reader described the process of trying to sign her elderly parents up to receive the Covid-19 vaccine.

In the past year, this virus has changed everyone’s life. Death, in an instant, became a constant worry for many. Schools closed and parents looked for ways to explain this new normal to their children. Industries shuttered, savings dried up and many families suddenly found themselves having to decide between paying rent or buying food. Quarantining and social distancing made holidays and celebrations look different.

When trials began to show high efficacy and effectiveness for vaccines, it offered a glimmer of hope for millions of people. In the United States, that glimmer turned into a bright promise of returning to some semblance of our full lives after the FDA approved the Moderna and Pfizer vaccines. But the rollout has proven to be less than perfect. As Brenda Kotewa of Bellingham, Washington, put it, so many Americans are left “wondering if we’ll get the vaccine or the virus first.” According to Steve from Maryland, he and his wife are in group 1B, but even though the state has moved on to group 1C, when he tries to get an appointment “there is nothing within a 50-mile radius. Disheartening.”

Kotewa and Steve are two of nearly 1,400 readers who shared stories with us about efforts to get vaccinated, writing candidly about everything from waking up at dawn to try to secure a spot in that day’s vaccine allotment to having appointments canceled at the last minute.

Sprinkled in there were success stories, but most of them were, as many readers put it, because of sheer luck – getting on the right website, on the right day and pressing “submit” or “enter” at just the right time. For many, navigating the system to try to get an appointment has proven to be, at best, confusing and – because of delays – at worst, deadly.

Children trying to help an elderly parent figure out the scheduling process was a common thread. Denise Thomsen Kates, writing from Lewes, Delaware, described waiting in line in the car with her dad, a widower, getting by on snacks and one bottle of water as ahead of them, other cars would just pull out of the line and drive away, “no doubt because they needed to use a bathroom or were running out of gas. After four hours we were finally at the vaccine site, only to face more zig-zagging traffic patterns. But at least there were portable toilets at the site. My dad could use the facilities while I continued to move the car. But how did the people who were alone do this? They couldn’t leave their car. Yes I’m thankful my dad got his vaccine. Yes I’m thankful for all the volunteers who made it possible. But it was a terrible experience.”

Parents of veterans are having difficulty as well. Joan Gamso, who lives in Naples, Florida, expressed frustration about her dad’s local VA facility in Cape Coral, writing: “I have called numerous times and went there in person. I have been told they just do not have vaccines. It’s rather ironic that our local supermarket chain, Publix, has vaccines every week…but the VA does not…?” Gamso has since been able to get an appointment for her 96-year-old dad.

Joan Gamso's father Stanley

Others were relying on good Samaritans like Anchorage, Alaska, resident Diane Nigg, who works as a travel agent and contact tracer, and wrote: “As soon as I heard about the vaccine being available for older Alaskans, I contacted my clients to see if they needed help in signing up. Most of them did because they didn’t have computers and also weren’t aware of locations that they could call to arrange for an appointment.”

Then there were those who would otherwise be considered high-risk not being designated as a priority in the first phases of the rollout. This included people who are pregnant, work in essential jobs that are not in the health industry, have special needs or disabilities or are young with immunocompromising disorders and other illnesses. Heartbreakingly, one reader expressed profound guilt that working with the elderly at a facility put her first in line for a vaccine, ahead of all her own elderly family members – for whom she’s been struggling all along to obtain appointments.

Perhaps the most difficult refrain to read was this: “Please help.” So many of you wrote some version of that plea in describing your struggle and isolation. May the selection of stories below serve as a reminder that you are not alone.

Some have been lightly edited for clarity and flow.

‘I have never felt so worthless’

I am 46 years old and have stage IV lung cancer. I’m missing half of one lung. I am forced to go into hospitals frequently, as I am on active treatment. Multiple studies have determined a lung cancer patient’s risk of hospitalization to be 65%, and risk of mortality to be 25-30%. That’s approximately double the mortality rate of an 80 year old.

Yet, exactly because I am disabled and under 65, I have been denied the vaccine here in New York. Twice. The first time, I waited in line with my husband, a healthy college professor who IS eligible for the vaccine and secured an appointment. Although there were 60 no shows as of 3:30 PM, I was denied a vaccine per Governor’s orders. In other words, it was more important for the vaccine to go UNUSED than it was to give a terminally ill cancer patient a vaccine.

This is cruel. I have invested a lot of energy over the past six years to keep myself alive, despite a dismal prognosis. Yet it isn’t cancer, but a policy decision to give the vaccine to people who happen to work in certain professions (many of which aren’t actually at higher risk of contracting the disease), in lieu of giving the vaccine to high risk individuals, that may do me in. I have never felt so worthless. (On Friday, Governor Andrew Cuomo announced that starting February 15, those with some listed comorbidities and underlying conditions, including cancer, would be eligible for the vaccine.)

– Laura G., Wilton, New York

What would happen to my grandson?

I am a retired 72-year-old with asthma. I am also raising my eight year old grandson, who recently went back to in person school. After almost a year of staying home and isolated, my state decided that it was time for those over 65 and those in multigenerational households to be vaccinated. I spent two weeks on the computer and phone trying to find a vaccine appointment.

I am fairly computer literate because I am raising a child who has been learning virtually. I was checking every pharmacy chain, medical group and a mass vaccination site multiple times a day. I finally managed to secure an appointment for my first dose. If something happens to me, I don’t know who would take my grandson. I can’t imagine being unable to navigate the sign up pages like some of my friends. Once I am vaccinated, I am going to try to help my friends and neighbors who are struggling to get appointments.

– Sandra Westrand, Spokane, Washington

My father died from a disease he should have been able to get a vaccine for

My father was in a retirement home that was trying to get the vaccine. Unfortunately he fell and had to have hip replacement surgery. Despite my requests, he did not get the vaccine in the hospital. He then went to a rehab facility that had delays on the vaccine. He was scheduled to get the first shot but tested positive for Covid the day before that would happen due to an outbreak at the facility. He died five days later of a disease that he should have been able to get a vaccine for when he was at the hospital.

He was at incredibly high risk at age 82 with a history of pneumonia, heart issues, and being in a shared living situation. The day he died, I was told (by his doctor) that it didn’t matter if they treated him for Covid because he was going to die anyway.

– Theresa Harper, Castro Valley, California

Theresa Harper and her father at Christmas in 2019

Pregnant, canceled and rescheduled

As a pregnant teacher, I have been trying to get vaccinated ever since my state started phrase 1B. I signed up for a vaccine everywhere I was able. A few days later, I received an appointment only to have the site call and cancel. I rescheduled. I received another call from the site saying that the link was down and I should have never received the appointment to begin with. The appointment was canceled for a second time. I have made an appointment at another location later this week. I am hopeful I will be able to receive my vaccine.

– Kelly, Maryland

The staff at my parents’ doctor’s office laughed at me

My 94-year-old parents, who still live alone in the Paramus, NJ home in which I grew up are confused and frustrated as they have followed the steps which they were directed to do.

Weeks ago when the websites first went up, they had registered with every NJ vaccination site. They expected, as the websites stated, to be contacted to schedule an appointment, but they have not received any contact whatsoever. Seventy year old friends of mine who live near them contacted a site and were able to get appointments and have now been vaccinated. I then started helping my parents to no avail. I log into the sites multiple times a day hoping for an opening anywhere in NJ. I will hire a limo to get them where the vaccination is as I live in Lititz, PA. I even contacted my parents’ general practitioner only to have the office staff laugh as I inquired and asked for their assistance.

My issue is this: why haven’t 90+ year olds, who registered, been contacted and scheduled before healthy 70 year olds? Why aren’t doctors’ offices coordinating with the state to make sure this part of the population is taken care of? There are many people like my parents who are fortunate to not need a nursing home or assisted living but need assistance with this pandemic. How many are waiting for that e-mail or call? How many do not even know what to do? My parents are starting to feel that this is a “triage” and that their age is seen as not worth saving.

– Karen, Lititz, Pennsylvania

Two states, two very different stories

My story is awesome. I live in Louisville, Kentucky and our governor and his cracker-jack team have this vaccination gig working well. I am a teacher and when it was our school’s turn to sign up for a vaccine, I went directly to LouVax.Com, put in my info and got an appointment the next day to receive my first vaccine. Our fairgrounds hosted a drive-thru vaccination site and I was through the line, vaccinated, waited for 15 minutes next to ambulances ready to rush anyone with anaphylactic shock to a hospital and was on my way home within 25 minutes. It honestly couldn’t have been easier.

Unfortunately, this has not been the case for my 80 and 81 year old parents in Florida. Their local health department has partnered with an events/concert site and I have been trying to help them get appointments. The site is extremely frustrating to use. It opens at exactly 9:00 am and one is immediately told that they are in line and to wait. Once the individual’s turn arrives the site says to hurry and select a time. I scrolled through every single time slot and was told that all spots were filled. Then the site just shuts down.

I had three browsers open and went online exactly at 9:00 am and received no appointments. My parents have been going through this week after week with the same outcome. Whoever is handling Florida’s vaccination registration needs to contact Kentucky’s governor for some tips because what they’re doing isn’t working. I’m honestly surprised that we don’t have a FedVax system that assigns appointments to individuals instead of making registration such a challenge for these seniors. Especially in places like Florida, where a large portion of the population is over 65, I think we are asking a great deal from a group of individuals who are definitely immigrants to the usage of a home computer. I fear we will never get to herd immunity if the registration system doesn’t get tweaked quickly.

– Lauren Becker, Louisville, Kentucky

Living in a state where there isn’t a mask mandate

I’m almost 75, a little overweight and have medically controlled high blood pressure. I live in a rural area between Tulsa and Oklahoma City. Our almost useless appointment registration system is a very not funny joke. All I get day after day is a list of “no appointments available” locations. I can only hope that President Joe Biden’s plan to give states information about how many vaccines they will receive three weeks in advance will help.

By the way, Gov. Kevin Stitt still won’t issue a mask mandate. Therefore stores and shops can’t enforce mask wearing. It frightens me to the core to have to shop for groceries. More than half of the other shoppers are maskless. No vaccine and no protection is a potentially deadly threat to me.

– Sharon Blake, Oklahoma

Two computers, one iPhone, one iPad – and no appointments

This morning was the third time we woke at 5:30 am after a restless night to set up our two computers, one iPhone and one iPad to the Publix website hoping to set one of the 3000 reservations in Volusia County, Florida. We never moved beyond the ‘refresh every 60 seconds’ page and by 7:10, we were told the site was completely booked. We will try again in a few days. Very frustrating, especially as we hear of those who were successful.

– Angeline Barretta Herman, New Smyrna Beach, Florida

‘We were told we would need to start the process again’

I am 73; my wife is 67. Even though we are in a group that is eligible for the vaccine, we have not been able to find any in the area. Virginia has health districts which administer the vaccine distribution; our health district has no good information on their website. We have twice had specific appointments for inoculations and both were canceled by the providers.

This last time Kroger called an hour and a half before the appointment to say it was canceled because the store had run out of vaccine. When we inquired about whether we would be contacted and rescheduled when they received additional doses, we were told that we would need to start the process again but that their appointments were filled until the end of March.

– Arnie, Virginia

The luck of a well-timed phone call

I live in rural west Tennessee and am 73. I put myself on the state waiting list a few weeks ago through their website. From a social media group in my neighborhood, I found out yesterday that they had opened up vaccines to those 70 and over. I had not heard from the state about where I was on the waitlist and could get no specifics from the call center.

So I decided to call the county health department and they told me I could come in at 1 pm for a drive through vaccine. I only had to wait about 10 minutes and it was quite efficient. But if I hadn’t called the health department that day, I never would have known about it and would still be waiting for a notice that might never have come.

– Susan Nelson, Fayette County, Tennessee

Fear blocks the light at the end of the tunnel

I was designated an essential worker by the Governor last March. My wife was let go from her job but then found a job with Costco. I have believed from day one that critical care health workers, teachers and essential workers should be able to get a vaccine.

Well, I am registered on three health department websites, have gotten a text to make an appointment, then there are none available. Walgreens, Jewel, private doctor, NOPE, nothing. I worked overnight this weekend and tried to time it at exactly midnight to see if ANY entity maybe added more capacity. Get inside the portal, all is going GREAT, then nothing. Circle of death, Bad Gateway, or simply frozen phone, tablet or desktop computer.

Local officials are over promising and under delivering. A friend who works from home several days a week for the Illinois State Police got vaccinated. She said was incredibly well run, in and out after driving to Chicago’s McCormick Place. Why can’t that implementation be scaled? How do we reward success with more opportunities?

I fear for my wife, my family. I’m not special but both me and my wife have been keeping the commerce running for nearly a year now. I’m afraid our luck will run out just as the light at the end of the tunnel slowly comes into focus.

– Frank Wiltse, Plainfield, Illinois

What about high-risk people who are bedbound?

I work full time from home, which is fortunate as I am the guardian and caretaker for my 100-year-old mother. I have pre-registered her on our county’s vaccination site. I reached out to the Maryland Department of Health on what to do as she is bedbound. Clearly she cannot “go” to a vaccination site. It was not easy to find a place on the site to ask a question, but after quite a bit of searching I found a place.

I received a reply that didn’t answer my question at all but gave me information on how to find a clinic nearby. And if I had additional questions, it said that I should call my local health department. I tried that, but after an hour on hold I gave up. It seems that this gap of making the vaccine accessible to vulnerable, elderly home-bound people is not being addressed.

– Sharon, Maryland

‘I’m so thankful that we were able to get this good medicine’

Our local tribe has a drive-thru vaccination clinic. First our Elders and the healthcare workers were vaccinated. A few days later, I received a robo-call from the clinic telling me that I’m eligible. I got my first jab with no problem. Shortly after, the clinic began offering vaccines to non-tribal spouses, which my husband was happy to get!

My mother lives with us, and she is Finnish-American. She’s got good health insurance (retired Army nurse), and she was only recently (2 days ago) able to schedule an appointment that isn’t for a few more weeks. She’s got a pacemaker and other factors that have her high risk, along with being nearly 73 years young.

It is frustrating, and I couldn’t help but feel bad that my husband and I could get our jabs, but here, my mother, a veteran, couldn’t yet. Oh, and she was dependent on me for the help to get this sorted – she doesn’t navigate the internet very well.

I’m so thankful that we were able to get this good medicine. I get my second Moderna dose on Monday! It is a good day to be Indigenous. Can’t help but to feel bad that so many are suffering and wanting this vaccine, but I’m doing my part in our home being a covid-free home for our family, and ultimately, our community. And I’m especially proud that our tribes have access to this amazing medicine!

– Kristine D., Qinuyang Unangan/Native Village of South Naknek, Alaska

RESTRICTED vaccine cartoon opinion

The most frustrating lottery in the world

In California, it took four of us to try to get appointments online for my elderly in-laws. Appointments opened up at noon on a Saturday. We had my two teens each on their own laptop, my husband on his phone and my sister in law on her device trying to secure appointments. After 30 minutes, some 10,000 appointments were booked. We were lucky enough to get one of them an appointment.

It’s like a lottery, so frustrating. There just aren’t enough vaccines to keep up with demand. We have to wait for the next round of appointments to become available to try to get my mother-in-law an appointment. Meanwhile, my sisters and I are trying to book appointments for my elderly parents in another county. Both my parents and my in-laws don’t speak English fluently and are depending on us to help them. What about those folks who have no one to advocate for them? This is just sad.

– Isela Salgado, Lake Elsinore, California

‘It’s been a long lonely journey’

I’m so excited for the vaccine, but so far I don’t even know when my time will come. Living with a disability, I have been alone at home working remotely from the first news report of a man diagnosed, just two counties away – about an hour away. It’s been a long lonely journey. I’ve been angry at people feeling oppressed by mere weeks of shelter in place orders, and being more and more reckless and defiant in their behavior, while I and many others with disabilities continued to tighten our circles. On the other hand, as a counselor, I understand what isolation does to people, and I’m compassionate about their need for a little normalcy. I want my children to be able to return to school.

I am starting to see friends and family getting the vaccine, and while I am excited for them, there’s very little consistency on who is getting it first. I’m sure it is hard to determine the best approach because everyone needs the vaccine, but as the clock is ticking, a huge group of people with disabilities who are able to live independently with some assistance – sometimes forgoing the assistance to keep ourselves safe – are left wondering if we’ll get the vaccine or the virus first.

– Brenda Kotewa, Bellingham, Washington

A nursing mom’s experience

I am a school-based Speech Language Pathologist, so in Illinois, I am considered in group 1a. I am also a mom of a newborn so it was important for me to be vaccinated as soon as possible to help protect my family who either can’t receive the vaccine or won’t be able to receive it for months due to being in a lower priority group. My school district has been in person since August and has not had an outbreak, but has had numerous student and staff cases.

Due to my job as a SLP, I am within 6 ft of students for more than 15 minutes throughout the school day. Finding a place to receive the vaccine was extremely frustrating with only hospitals and one doctors group in the county having access to the vaccine. I called multiple pharmacies and was either told they didn’t know anything or to suggest that I try other pharmacies in a neighboring county. When I contacted them I was told I needed to live or work within that county to be eligible even though they had appointments available.

I was finally able to contact the doctors group who I do not use and was able to begin the process of signing up for their appointment contact group when my school district was able to secure vaccine spots for employees. I was able to receive the first shot of the Moderna vaccine just over a week ago.

– Katelyn J., Carol Stream, Illinois

‘Like going to Wal-Mart on Black Friday’

I am a nurse and work from home doing case management for a Medicaid HMO. By day I am saddened by the stories I review of people hospitalized with Covid-19. By night I am angered by the stories I hear from friends and their families about traveling, visiting and for the most part ignoring this pandemic. In the between times I have been attempting fruitlessly to secure an appointment for the vaccine.

At first it was just a word of mouth rumble…vaccines available here, a mysterious phone number to call, a waiting list to get on in a far flung county. I dutifully followed every lead like a private eye without any success. Occasionally a friend or coworker would call with the great news. “I got one!” But it seemed a very mysterious process and never worked out for me. I contacted the local health dept. and was finally directed to sign up via an online portal which I did immediately and joyfully spread the news to all friends who were vaccine seekers. Now I get a voicemail when vaccines will be available and a time to log on to the portal.

Sounds great right?! Well, NOT. It is like going to Wal-Mart on Black Friday. Everyone rushing at once and of course the website crashes requiring re booting and that eternal circle of dots going round and round and round. When I am finally able to get to the treasured date/time choices I am required to pick date/time for both the first and second doses then am directed to another screen that tells me if those choices are available. If not it is back to start over…and over…and over.

I am left with sadness…and anger…and fear. I do not want to become one of those Covid cases that a nurse case manager is reading about on her work computer. Pray for me!

– Janie Novitsky, St. Petersburg, Florida

‘I see it like oxygen masks on a plane’

I live in Mississippi. I am fortunate to be retired (I’m 75) because landing a Covid vaccination appointment is a full time job. I have a good network of friends and I keep up to date with the news. Therefore, I knew when appointments opened up and how to sign up. So much early info was word of mouth. My 90 year old stepmom and I drove 90 miles south to get our first shots. I managed to get us appointments for the second one on February 16th. So many people (especially in a poor, rural state) don’t have computers and smartphones or even email addresses (required).

I have helped some people. I see it like oxygen masks on a plane. I’ll put one on my face and then I will help others. I see the Oxford MS police department is helping people sign up. Why aren’t more community agencies or churches helping? We need more vaccine taken directly into the community instead of waiting for the community to come to the vaccine.

– Karen Clark, Clinton, Mississippi

If we had a national policy, this wouldn’t be happening

I am a 75 year old retired teacher from Los Alamos, New Mexico. I have asthma and use an oxygen concentrator all night and most days. My husband is 78 and has a heart condition. We are both in the high risk category for Covid-19. We are currently living in the Birmingham, Alabama area in order to assist my son and daughter-in-law with the virtual schooling of 2 of their young sons, ages 6 and 8. They also have two toddlers, ages 2 and 4. All of the children are high energy boys.

We came to help relieve the pressure on the family since both parents’ jobs require them to be at work in person. We pray that their efforts to use Covid safe practices at work will continue to be effective. In Jefferson County, Alabama, a call-in system is set up to register for the vaccine. We have now called in to register as well as registered in-line. They do have our names, ages, and health problems listed. We have not been called back to make appointments. We keep talking to people who say we will be called or emailed to schedule an appointment.

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    To be fair, they don’t ask if we are permanent residents of the state. This has been going on for the last two months since the system has been in place. We still have no appointments. Meanwhile, we heard that a neighboring county has been allowing drive-up vaccination first-come, first served. We are considering vaccine tourism in Mississippi or Other nearby states. But travel puts people at risk as well— especially considering the new Covid variants contagion rates. If we were in New Mexico we would have received our shots already because our Governor, Michelle Luhan Grisham, is really on top of her game. If we had a national policy, these discrepancies would not be occurring, would they? Thanks Trump. (On Friday, Cathy said she received an email from a local hospital with a date, time and location for an upcoming appointment.)

    – Cathy Herbison Knoop, Alabama

    ‘We work, we wait and we try to be as safe as we can’

    When the world shut down, many “essential” industries remained open. The industries that employ myself and my husband (construction and manufacturing respectively) continued to work. Now, Ohio has decided that we need to get in line later rather than earlier. We both have conditions that could result in a more severe covid infection, but these conditions are not being addressed (autoimmune and a genetic blood clotting issue for me, diabetes for my husband).

    It is extremely frustrating that we can’t even sign up and get a place in line for when our time comes up. If only this state was following the CDC guidelines, it’s likely that at least my husband would be fighting for his spot in line now. Instead, we work, we wait, and we try to be as safe as we can, all the while living in ” red” Ohio, where masks are worn according to political affiliation.

    – Jennifer, Ohio